Super Jack!!!

MOV010

2011-05-21T21:04:00.000-04:00

Jack is eating so many new things! In addition to the macaroni and cheese, he is eating goldfish crackers, grapes, raisins, apples, mashed potatoes, and chicken fingers! Here is a video of Jack's progress!

Jack reading 04-02-11

2011-04-03T07:56:00.000-04:00

MOV008

2011-02-04T20:27:00.000-05:00

MOV004

2011-01-21T23:27:00.000-05:00

MOV006

2011-01-21T23:11:00.000-05:00

MOV008

2010-11-12T09:00:00.000-05:00

MOV006

2010-11-12T08:41:00.000-05:00

MOV005

2010-11-12T08:40:00.000-05:00

MOV003

2010-11-12T08:29:00.000-05:00

MOV06306

2010-11-12T07:57:00.000-05:00

MOV06307

2010-11-12T07:56:00.000-05:00

Claire's big girl bed

2010-09-13T20:57:00.000-04:00

Claire's growing up! Mommy and daddy made her a big girl bed (from scratch!) and she's been doing great sleeping in it. She really loves it!

Jack's whale sound

2010-07-12T19:58:00.002-04:00

Claire roll roll rolling

2010-07-12T19:58:00.001-04:00

Claire eating with a spoon

2010-07-12T19:58:00.000-04:00

claire saying "baby"

2010-07-12T19:57:00.000-04:00

Jack spells his name

2010-07-12T19:55:00.000-04:00

Jack with daddy's glasses

2010-07-12T19:54:00.000-04:00

Long overdue

2010-07-06T21:24:00.003-04:00

Ok, First we are going to get the bad stuff out of the way so that we can focus on the good.

Jack
Jack started to have seizures again. He stopped breathing a little over a week ago. We called 911 and it took the ambulance 20 minutes to get to us. I would say that it was the worst one he has ever had. The thing that threw us off the most is that it happened in the middle of the day. Then, just when we were feeling secure that it wouldn't happen again for 2 months he did it again this Sunday. We didn't even bother calling 911 this time. We were able to get him back on our own just like we always do. We finally caught this one on the monitor and had the information downloaded this morning. The tech said she had never seen anything like it in all the years she has been downloading pulseox's. Now we live on edge waiting for the next one.

Claire
Claire had her first surgery on Wednesday. It was a full, heart wrenching 5 hours. It didn't go as expected but turned out to be just fine. The recovery is harder this way but they were able to fix her ureter and bladder. With her anatomy being different than expected they had to use 3 external catheters, 2 out of her abdomen. They removed one on Saturday, one today, and the final abdominal tube will come out next week. Then, we have a second surgery at the end of the month to do some final repairs. Her recovery has been miserable. The poor baby just can't be herself. My child who has always sucked her medicine right down wanting more has turned into a spitter. I really don't blame her with all the different medicines she is taking now.

OK! Enough of the bad! Now on to the good!!!!

Jack
Jack is vocalizing more and more! He now tries to say most numbers, quite a few letters, On, thank you, and sings some songs. He is doing simple math and spelling. He is just proving to us every day just how smart he really is! He is loving Dora and Diego, as usual. He LOVES ice cream and repeatedly aske to go the "the store with mommy's drink", aka Sonic, for an ice cream cone. He makes sure to get every last drop out of the cone without actually biting the cone. I have no idea how he does it!! What else.... He is now trying every kind of food I am giving Claire. He reaches up and takes it off her high chair tray. For now, Claire is accepting it but as she gets a little older she will realize she can yell at him. He is a wonderful, loving brother.

Claire
The question is, What is Claire not doing??? She is now RUNNING across the house. She can move so fast! She loves Dora and the puppies and will ask for it all day long. She loves to give her stuffed animals kisses and take them for rides in the stroller or on her scooter. She loves to give kisses, her favorites being butterfly kisses and eskimo kisses. She is just such a loving little girl. She has 6 teeth and is now cutting 2 more. She loves to do somersaults. She will tuck her head under and yell, "roll roll roll!". It is pretty darn cute.

Both kids are doing incredibly well. Philip and I aren't doing so bad ourselves. :-) Pictures to come soon!!!

Jack is going down the big boy slide now!!

2010-06-16T23:12:00.001-04:00

Update and Pictures!!

2010-05-18T21:04:00.003-04:00

There has been a lot going on these past few weeks! We finally got a nurse in the house which worked out well for a while but it had to come to a close today. We are working to find someone new that will hopefully fit with our family.

We got established with a new Urologist that is planning to do surgery for Claire on June 30th to repair her kidneys. We really like him and feel really great about what he wants to do. We also met with a neurologist that we will NOT be going back to!

We have been busy getting the house decorated and organized which is making us all feel pretty good. The kids love their playroom, although Claire would rather be climbing the stairs....

Jack is doing pretty well. We were hopeful that his episodes were environmental and now that we were away from our Ithaca house they would stop but unfortunately he had another bad episode Friday night. He has had some trouble feeling himself since. The good things with Jack far outweigh the bad things right now. On Monday we took the kids to get their pictures taken at Sears and for the first time in his life Jack actually WANTED to get his picture taken! It brought tears to my eyes! (you can see the pictures below...) He is also completely in love with Dora and Diego. He has several toys and loves to pretend with them. The cutest thing he does is singing some Dora songs. I will sing, "I'm the map, I'm the map, I'm the map, I'M THE MAP!!" and then I say "Jack's turn!" and he'll mumble in a sing-songy voice! It is Way cute!!!!

Claire is about to turn ONE! I can't believe it! She has come so far this year. She has been standing independently for two months now but I think she is fearful of those first steps. Oh, but she is not afraid of steps! She climbs the stairs 20 times per day! She loves to get up to the landing, turn around and laugh at me. It is really sweet. She is using all sorts of words. She says "up, mama, dada, jack, ball, baby, dog," and others. She also makes several animal noises. She eats everything under the sun! She loves all fruits including strawberries, blueberries, grapes and bananas. She also eats everything we eat during the day. She even had a grilled cheese sandwich for lunch today. She really enjoys her meals and transitioned to milk without any issue. It is amazing to see the way a typical kid develops their eating skills.

So here are some pictures that were taken yesterday. I hope you enjoy them!!

The Flu

2010-04-12T09:33:00.003-04:00

The title says it all. Jack came down with the flu on Easter Sunday. We were hoping it was just a 24 hour bug but it wasn't. He was sick for a whole week. Then, the day before Jack was better Claire came down with it and is now miserable. Besides the usual flu yuck she is not sleeping and Philip and I have been up with her through most of the night. My poor babies have been so sick and with no nursing care my steam has almost run out. I really hope the state approves our PA soon so we can get a nurse working with us!

Happy Easter!

2010-04-05T22:21:00.002-04:00

We have had such beautiful weather here! We have been spending a lot of time outside playing in the yard, going for walks, and going to the playground. We had our first appointments with our new pediatrician and we were very happy! Claire is a whopping 24 pounds! Who would have thought that our little skinny baby would be 24 pounds! She is catching up to her brother! They already wear the same size diapers so I don't know what I am going to do! Right now we are dealing with a sick Jack. We are really hoping this doesn't last too long. We'll update again soon! For now, enjoy the pictures below!

Happy Easter!

2010-04-05T21:45:00.008-04:00

Claire and her "May-May"

First time on the swings! Big brother was a big helper!

Chillin' with Diego!

Very creative, Jack!

Look at those teeth!!!

Yay! Jill came to visit!

The Easter Bunny came!!!

"I see Eggs outside! Come on mom! Open the door!!!

This is our "sitting room" It's almost finished!

Again, the sitting room.

Our half bath

Philip pulling into the driveway for the first time in his new car!!!! Good bye Saturn!!!!!

New Ride!

Claire playing peekaboo!

2010-04-02T21:23:00.002-04:00

Lots of Pictures!!!

2010-03-20T18:07:00.006-04:00

A Fresh Start

2010-03-18T11:02:00.002-04:00

I realize it has been a long time since this blog has been updated and there is a very good reason for that. Or family has been going through so many changes in the last few months. We have a whole new life in a new place with new jobs and new friends. Philip got his PhD from Cornell in January (in record time! Just 4.5 years!) and accepted a job with IBM in Yorktown Heights, NY which is in Westchester county and a suburb of NYC. He is working on a secret project he is not even allowed to tell me much about it (not that I would understand anyway :-D). It is still in the Nanotechnology field and so far he loves what he is doing.

Since we couldn't afford to live in Westchester county and didn't want to pay $5,000 per month in rent we decided to move north and have a commute. We chose a lovely town called Fishkill (Kill in dutch means "stream") It is just south of Poughkeepsie. It has everything we could want from restaurants to shopping and there is a hospital nearby. We live in a wonderful community of townhouses and we are looking forward to the pool opening up this summer to meet some other families. It is just starting to warm up after the huge snowstorm leaving over 2 feet of snow and then the rainstorm flooding a lot of the area. Luckily we did not loose power or have any flooding. We have been so busy making our new house into our home. We still have a lot of decorating and hanging up pictures but it is starting to feel a little bit more like our own. We were even able to get some new furniture that didn't come from a box! I felt like such a grown-up going to the furniture store to pick it out and then waiting for the delivery. I love the pieces we chose! For those of you who know me well you know that I love to be in the kitchen. Unfortunately in our new home the kitchen is rather small and I struggle with space. Also I am in a constant battle with my oven that tends to burn everything I bake. I had to bake Philip 3 birthday cakes before I got one that was edible. I need some more time to figure this out and learn how to adapt.

Jack and Claire are doing wonderfully adapting to their new environment. Jack acts as though this has always been his house. I was really worried about the fact that there are 4 levels in our house and Jack didn't have that much experience with stairs. Well, we have been here 3 weeks and he can go up AND down the stairs safely! Just yesterday I was changing Claire's diaper when I heard him cry out from far away. I had thought he had run into the kitchen but I was wrong. When I found him he was halfway down the stairs from Claire's room on the 4th floor! He was pretty proud of himself and mommy realized she needed to buy a new gate this weekend! :-) One of the wonderful features of our house is a playroom on the main level. It is complete with built in cabinets and shelving that makes organizing a dream! There are also french doors that seperate it from the rest of the house so if I don't want to look at the mess of toys at the end of the day I can just close the doors. Both Jack and Claire love to play in the playroom all day. Claire is really developing since we have been here. She is 9.5 months old but already thinks she's 1. She has 3 teeth and another 2 right at the surface. She is climbing up and cruising on everything! She's even climbing up on her little doll stroller and walking behind it all over the house! She loves to climb up on our laps and then just push herself up to stand! She can stand by herself for a few seconds before falling. She will be walking soon for sure. The other amazing thing about Claire is her eating. With Jack, we never got to experience oral eating. Claire is way ahead of her peers and LOVES her food! The only things she has not liked is tomato basil spaghetti sauce (all others ore ok...) and last night we found out that meatloaf is not her favorite (takes after her momma). Other than those things she eats everything! Most anything I cook for dinner she eats. Most babies her age are still eating purees but not Claire! She wants the big kid stuff!

So, we are still here and doing well. As soon as we find our camera adapter we will be able to post pictures from the last few months. Keep checking back!

A lot going on in the Waggoner house!!

2010-01-12T22:24:00.002-05:00

Life has been incredibly busy here lately. Claire is developing at a rapid pace! She is barely 7 months old but thinks she's a lot older. She is crawling all over the house! We have to be really careful because she will pick up the smallest thing out of the carpet and put it in her mouth. We never had to worry about that with Jack so this is just making up for it! Speaking of putting things in her mouth... She is eating everything she can get her hands on regardless of whether or not it is on the "list" of appropriate foods for her age. She loves yogurt, puffs, cheerios, and every fruit and vegetable, including broccoli!

Jack is doing well for the most part. The seizures have crept up again, the first one causing a nasty bump on the head. He also stopped breathing again Saturday morning. We are prepared for this by having oxygen, suction, and monitoring right here in the house. Aside from the medical stuff Jack has been doing some incredible stuff. He has been vocalizing quite a bit. It started just before Christmas. I asked him what Santa says and he said "ho ho ho". It was really cute. Since then he has been making all sorts of animal sounds and just today he said "banana"! We are so excited to here these beautiful words coming out of his mouth! He's also using a lot more imagination in his play. He loves to play with the toy house but for some reason the mommy always has to go in the kitchen and the daddy has to go on the couch... I can understand the mommy in the kitchen but the daddy on the couch?? Who knows.... He has also gotten in to Dora the Explorer. I am happy to move awa from Blues Clues a little but he on;y wants 3 episodes of Dora. A woman can only take so much!! Philip took him to Borders and Target the other day and he was able to pick out a book at Borders. He chose "Chicka Chicka Boom Boom" and remembered that there was an episode of Blue's Room that features the book. He has been sitting down with the book and his dvd player following along as they read the story on Blues. The next day I asked him if he wanted to go to the store with the train (Wegmans) which he usually loves but he shook his head no. I asked where he wanted to go and he signed "Store Red Letters" (Which is Target) I asked him what he wanted to bu at the store with red letters and he signed "Store Red Letters Book Again". He wanted to go to target and buy a book again! It was so cute that he remembered his special trip with his daddy! We ended up going to Wegmans anyway. He is really showing us how smart he is.

The biggest news for our family centers around Philip right now. He interviewed with IBM in early December and was offered the job on the spot. It took HR a while to get everything finalized but now he has officially accepted the job and we can tell the world about it! He will be completing his PhD this Friday and will be starting his new position with IBM on March 1st. The job is in Yorktown Heights, NY which is wonderful. We are so happy to be staying in NY state so Jack can keep his medical coverage through medicaid. The only downside is the cost of living in Westchester county. Right now, as a family of four, we are growing out of our house and need a bigger place. I have to take a step back sometimes and realize that it is not normal to find a house that is $2,000 a month and get excited about how cheap it is. We will be living in a neighboring county where the housing is a little more affordable but Philip will have a little bit of a commute. So we will be enjoying our last few weeks in Ithaca by visiting with friends and stopping by all our favorite locations including Purity, The Boatyard, Jillian's Drawers, Collegetown Bagels, and New York Pizzaria. We have made a wonderful home for ourselves here complete with great friends. It will be sad to leave this place behind.

I am going to be a little more on top of this blog by posting more pictures and videos. I hope everyone will check back and see what crazy things life is bringing to our home.

PICTURES!!!

2010-01-08T16:29:00.008-05:00

Halloween Parade!

2009-10-29T19:46:00.002-04:00

Tonight we went to the Halloween parade at Wegmans. We were certain Jack was not going to wear his bumble bee costume. We pulled into the parking lot after talking it up the whole time and found a huge crowd! We got him out and he tried to run away from me when he saw his "bumblebee shirt". Philip and I were able to get him into it and once it was on he was fine! He even let me put on the hat!! Grandma made such cute costumes for both Jack and Claire. We are so proud of Jack!

2009-10-22T09:57:00.013-04:00

We have had a lot going on recently. We travelled to Texas to visit Grandma and Grandpa. We also were able to go to my brother's wedding where Jack was the ring bearer. We are so happy for Josh and his wonderful wife, Brandy! We also got to visit with Ben, Taylor, and we got to meet Raleigh. A lot of family came in town for the wedding and all of them were so happy to visit with Jack and Claire. I'm sure they were happy to see Philip and I too but the kids were the star of the show! It was also wonderful to see all of our friends. We had the opportunity to go to Aunt Tina's 7th grade classroom and talk to the kids about CHARGE syndrome and about what Jack's life is like. They were a great group of kids that had a lot of wonderful questions for us. Claire got sick during the trip and had to go to the ER. It was pretty scary for me but after 4 days she was back to her cheerful self. I want to say a big thank you to Doc for seeing Claire and making me feel at ease about everything! Jack could not have been happier to be with Grandma and Grandpa. We all had a lot of fun.

At 3 months Claire was really struggling to gain weight and was diagnosed with Failure to Thrive, which is very serious. She was only 4 ounces above her birthweight. We had to put her on formula and went through several weeks trying to find out which one was right for her. Finally, after getting everything figured out she has put on 6 pounds in the last 7 weeks!! That is a HUGE gain! When we left for TX she was just growing out of newborn diapers and by the time we got back she was in size 2! I was so glad that I took size 3-6 month clothes with us because by day 3 she couldn't fit into any of her 0-3 month clothes. She has filled out so much and looks so much healthier. She is going to be 5 months old next week! This time with her has gone by so fast. It seems like just yesterday she was jamming her foot into my ribs. :-) She rolls like crazy, is starting to sit up, starting to scooch on her tummy, and eating solid food. She is just growing up way too fast! We go see her urologist on Monday which will hopefully provide us with some much needed answers about her kidney defect.

Jack has had a lot going on. On the positive side, he is incredibly happy and picking up sign language like no one's business. I show him a sign once and he's got it. He is now sleeping in a toddler bed and has not had a single issue with it. We thought it was going to be trouble to get him to stay in his bed with the pulse ox but he has done great. The first night in it he acted as if it had always been his bed. He turned 3 on Sept. 16th! I can't believe how big he is!!! The problem is that he is still having these "episodes" and had one monday night that was confirmed to be a seizure. We started him on medication to control seizures today. We won't know for a few weeks what the effects will be. We'll be watching him pretty closely.

Here are quite a few pictures from the last few weeks. You'll notice how much Claire has changed!

She is such a happy baby!!!

Jack's 3rd birthday!! We had an ice cream sundae party for him.

Jack wearing daddy's hat being so good on the airplane!

Being silly...

Claire did great too! It was her first plane ride.

Jack in his tux signing "all done" with one sock on and one sock off! He's so handsome!

Jack at the reception with dip all over his face.

Grandpa and Claire

Jack loved to play in the fountain!

Jack and Grandma

She's already computer savvy!

cute hat!

Grandma and Claire

First night in his new big boy bed! It's a race car but in our house apparently it is a train..

Claire's first time eating at home!!

Jack watching Blues Clues upside down.

I went scrapbooking all day and this is what Claire looked like when I got back. Daddy said, "I thought she matched!!". LOL

Claire is a big helper.

First time in her big girl high chair!!

This is what we woke up to on October 15th. COME ON!!! It's not January!!!

Jack at The Magic Paintbrush, which is an art studio for kids with special needs. He had a blast playing with the tissue paper. When we first went he screamed at the fact that it was even on the floor. He has come such a long way!!

Jack, Claire, and our wonderful friend who happens to be Jack's nurse, Jill.

Right after this picture was taken she tried to eat that pumpkin...

Jack and Daddy playing with the train set on a Sunday morning.

Claire's newest trick

2009-09-12T22:50:00.002-04:00

She's rolling from back to front so quickly nowadays, and then she picks up her head and looks all around! We're in trouble--she's gonna be a mover

Claire rolling over!

2009-08-25T20:25:00.002-04:00

Claire rolled over from her back to front AND her front to back both on August 18th, at only 11 and 1/2 weeks! We got a little bit on video, finally!

A lot going on

2009-08-15T20:45:00.007-04:00

We have had a lot going on recently. We had a good vacation to Illinois. We missed seeing grandpa but we are so glad he is feeling better. We did a lot of fun things and saw a lot of family and friends. We even stopped at Niagra Falls on the way home.

Claire is still having problems with gaining weight. She stopped throwing up a few days ago when we switched her antibiotic. We're not sure if it is a coincience or not. We'll have to wait and see. She has been a happy baby recently and has the most gorgeous smile! Seeing her smile makes the 4 am feeding not feel as bad. She is getting really close to rolling over from her tummy to her back so we are keeping the camera handy and we try to record each tummy time just in case.

The most stress has been because of our sweet Jack. Wednesday at 3:30 am his pulse ox machine started to alarm. When we went to check on him he was blue, he wasn't breathing, and his heartrate was falling. We were so scared. We called 911 and we were able to get him breathing again. We spent the rest of the night in the ER with no answer as to why this happened. We think it was a seizure so we went to the neurologist on Friday. They think his episodes may be migraines so we are going to do a 24 hour EEG at home to see if there is any seizure activity. Then, Friday night, he had a small episode and afterwards his head was really sweaty. We took his temp and it was 96.5. Within an hour it had dropped to 93.7 despite being wrapped in blankets. We went back to the ER and they slowly warmed him up. He was stable and they admitted him. There were no issues after that so they sent us home. We've been taking his temp every half hour throughout the night. They have stayed up but he is sweaty. It is very strange and we'll be talking to his doctor about it in the morning.

Other than making us a nervous wreck, he is doing some pretty fun stuff. He has started wearing daddy's hat, eating like crazy, and signing "I love you". He is an amazing child and I am so lucky to be his momma.

Here are some of our recent pictures including some from vacation!

ice cream and first smiles

2009-07-14T19:04:00.004-04:00

Here are some new pictures. Claire gave us her first smile and now gives us beautiful smiles every day!

1 month!!!

2009-06-25T15:56:00.007-04:00

I can't believe that Claire is 1 month old today! She is still quite the peanut. She reached her birthweight at 3 weeks and is slowly gaining. She's still pretty tiny and swimming in newborn clothes. Today was Claire's first trip to the pool. While neither child got in the water I think they still had fun.

We haven't had any nursing care in a week. It was a tiring difficult week but I'm still alive. It wouldn't have been so bad if Jack hadn't had seizures/episodes every day. The episodes themselves are horrible and then he is angry and upset the rest of the day. I count down the minutes to 5:30 when Philip gets home. I pray we have our nurse tomorrow but there is no way to know for sure.

2 weeks old!!

2009-06-12T18:26:00.005-04:00

We have now had Claire with us for 2 weeks! It has been rough being the parents of a typical newborn. Philip and I are running on no sleep but it doesn't seem to take away the joy of having Claire home with us. We've had a lot of trouble with Claire gaining weight. She fell from 8 lbs 9 oz to 7 lbs 7 oz. She is slow to gain it back so we are realy having to work hard. We've had lots of doctors visits (and really racking up the co-pays) to check on her weight and get advice. She is now up 3 ounces so we don't have to go back for a week. Yay! We never thought she would even fit in newborn clothes and now we are starting the third week and she is still swimming in them. We're going to go to the used kids clothes store tomorrow to try to get a few little outfits so I'm not doing her laundry twice a day (she's a spit-up girl and 4 outfits don't do it!). If she keeps gaining like this she should be in her cute 0-3 month stuff in a week or two.

Today we actually had both kids napping at the same time! This gave Philip and I some time to make homemade pizza for lunch and get some rest. We were planning on going to the park today but it looks like it is going to rain so we'll wait for the sunshine tomorrow. Hopefully I'll have some good pictures to post from that trip!

Here are some pictures of Jack and Claire. The ones at the bottom are of her first bath in her bathtub. She hated the sponge baths but surprisingly loved her bath in the tub!

More pictures!

2009-06-03T12:15:00.005-04:00

We were able to bring Claire home on Sunday, the 21st. Here are some more photos, even including a family portrait!

Claire Elizabeth Waggoner!

2009-05-30T14:12:00.004-04:00

We're all doing well, here are some more pictures of our little Claire!

My little sister's here!

2009-05-28T21:22:00.004-04:00

And I'm not sure about her! A baby has been something about mommy's tummy for 9 months, not sure what this thing is...

Little jellybean was born this morning at 8:32 AM at 8 pounds 9 ounces and 20 inches long. She and Amanda are doing very well, and the baby so far seems really healthy. We're so glad she's here!

Here are some pictures; I'm sure Amanda will make more elaborate posts later.

- Jack's dad

Mom and dad beforehand

The happy family!

Jack genuinely uninterested in the goings-on

New Pictures and videos

2009-03-23T14:01:00.006-04:00

We have been quite busy recently. I know I need to get better about updating the blog. Jack is now almost completely oral! We give him one bolus of pediasure and water after he is in bed but everything else comes from his dip during the day. We're quickly learning that he loves peanut butter and strongly prefers the dips that have it. We have also been working on non-dip foods. He does better with foods that he can learn the sign for. Just in the past few days he has gone nuts over my homemade chocolate chip cookies and pizza. This morning he actually broke down the cookie enough to eat about half of it. Over the weekend he saw me dipping a cookie in a glass of milk and decided he needed to dip the cookie in his dip. It is very cute and completely gross. :-) He has also been signing pizza to ask for some pizza crust. Philip and I are thinking that we need to make him some breadsticks and let him lick tomato sauce off. We'll see what he thinks about it.

The other thing that is happening is that he is bursting with new signs. He picks them up almost immediately. Our speech therapist wants us to count the number of signs and give her a list but he is learning new signs everyday! There is no way to keep up! My favorite new sign is "bear" He looks so cute when he does it.

Everything is going great with the baby. We are now about 9 weeks away from the delivery if everything goes as planned. She is scheduled to be born 2 months from Saturday, which is May 28th. I'm getting pretty nervous about the whole thing. As most of you know, Jack's birth was far from typical so even though I have had a c-section before, I have no idea what to expect as far as the process and recovery will go. I am also not ready at home. I have so much to do to get all the little girl stuff ready and get out and wash all of Jack's old toys and gear. We go to the perinatologist on Monday and if her kidney is not any bigger than it has been she will be considered within normal range and we won't have to go back! We're all praying that is the case.

Here are some pictures of what Jack has been up to and an incredible picture of our little Jellybean.

Jack after his EEG

This is Jack at the National Museum of Play in Rochester. He had such a good time!!

They had a Wegman's set up for little kids. Everything was at their level. It was Jack's favorite part.

Jack at the butterfly exibit. He didn't really notice the butterflies but loved the water and plants.

So tired after a big day of playing at the museum!

Miss Jellybean laughing at her toes

Miss Jellybean pretending she's asleep. About 30 seconds after this picture was taken she was kicking me!

*Youtube is not cooperating today so I'll have to post the videos at another time. Keep checking back!

Big things happening at the Waggoner house!!

2009-02-01T15:27:00.003-05:00

I don't even know where to start! Since Jack's "episode" right before Christmas there has been an explosion of development! This is a list of all the new things he's doing. Here we go!!

1) Jack now LOVES soccer! There was an episode of Blues Clues he became addicted to where they went to soccer practice. Since starting to watch the episode (12 times/day) he has been incredibly interested in everything soccer. I bought him a sweatshirt that has a soccer ball on it that he loves to wear! He looks down at it all day and points out the ball and gets excited. He also has a nerf-like soccer ball that he now kicks all around the house. He even follows the rules of soccer and doesn't use his hands! It is so cute!!!

2) Jacks sign language skills are really taking off! Earlier this week he learned 6 new signs in one day!! He is now learning the power of signs and communication. He can now sign: mom, dad, bath, green, yellow, purple, red, blue, black, white, orange, ball, carrot, apple, cracker, table, chair, circle, elephant, fish, more, all done, please, thank you, water, soap, car, dip, and more to come!

3) We are discovering paint! Jack has really enjoyed making some beautiful masterpieces. We also got him a paint set where the paintbrush lights up the color of the paint (thanks for the idea Crystal!!!!). He absolutley loves playing with it and signs the colors as it changes. He gets the biggest belly laugh when the color changes!

4) He loves his baby sister. He will snuggle with me and lay his head on my belly. He'll also point to my belly and make a "b" sound. When we ask him to, he'll kiss my baby with his lips. It is all very sweet. We're hoping these behaviors of affection will carry over when she's born. Jack is going to make a great big brother.

5) Jack now has his own room. He is such a big boy! We were expecting a transition period and for it to take time to accept his new room but he took right to it and loves being a big boy in his room. He has a fish tank that he looks forward to seeing when he wakes up in the morning. He also loves to close his door when we go to read stories for bed. It has really made a huge difference in everyone's sleep patterns.

And now for the biggest news of all!!!

6) For 2 weeks Jack has taken all of his daytime meals orally!!!! By trial and error we learned that Jack LOVES baby carrots dipped in ranch dip. When we started we went through so many bottles of ranch dressing! The problem was that Jack is severely lactose intolerant and was having trouble with the commercial dressings. I tried the seasoning packets but as it turns out, they have more lactose than a bottle of dip. While working through this we were able to use food coloring to make the dip orange. Then we slowly added orange vegetables (carrots, sweet potatoes, and squash) to the dip to make it a little healthier. I finally found a recipe for seasoning and make it by the cup. I have tried so many different things for him to eat. Now, he eats every 2-3 hours. We are able to add this ranch seasoning to full meals blended together. Honestly, I think it is pretty gross. He'll eat a dip made of rice, ham, potatoes, carrots, pears, and banana all blended together with the ranch seasoning. For breakfast this morning he had oatmeal with applesauce and sweet potatoes (to make it orange) and yes, it had ranch seasoning. He digs right in and gobbles it up!! Hey, I'll do whatever it takes to get him to eat!!

Now we are starting to work on drinking from a sippy cup. It's not going well so far. I think I need to find the right cup. I truly believe that if it had Blues Clues on it he may go for it. The problem is that they don't make Blues Clues sippy cups anymore. I'm trying to find Playtex design your own sippy cups (not with straws) so I can design them with Blues Clues stickers. Today at the grocery store I saw a sippy cup with cute little cars on it. Jack has been really into cars recently and I thought he may like it. I let him hold it, he looked at it and then threw it into the basket. Unfortunately when I got it out of the package and he realized what it was he didn't want anything to do with it. :-( I even go to the extreme of drinking out of it myself while he's eating and offering it to him every few minutes. I thought that if he thought I was really liking it he may try it! We'll see what happens in the next few weeks! We need to get the liquids in him orally and then we can start weaning him off his feeding tube!!

Like I said, we have so many exciting things happening with Jack! There have been so many developments. Philip and I look at him and can't believe how big he is. He's not a little boy anymore. He's turning into a little man!

We also have big things happening with Jellybean. We found out what is causing the problems with her kidneys. She has what is called a double collecting system. This means that the inner part of her kidney has two sacs instead of just one. They will have to do some testing after she's born to see how the collection system is affecting her kidney function. We pray that this kidney issue is not associated with CHARGE. We will be nervous and worried until the day she gets here. What is frustrating is that I feel like I am going to have to choose between jellybean's care and my care during the delivery. There is a very real possibility that my doctor doesn't do c-sections on the same day as a pediatrician that I trust. I need a surgeon that will be able to take care of my high-risk delivery which becomes more and more complicated by the day as I creep over the line of having polyhydramnios. I also need Jellybean to be in the care of a pediatrician that knows about CHARGE and also about her kidney problem and can make rational decision if there is a problem. We pray we don't have to face any difficult situations but there is just no way to know. I go to my doctor next week and then back to the perinatologist the first week of March. We pray for some better news in the coming weeks.

It's getting late so I don't have time to post pictures tonight. I promise I will post some new pictures and videos in a day or two so keep checking back!!

It's a.....

2009-01-12T20:24:00.010-05:00

GIRL!!!!!!!!

We are so excited to be expecting a little girl!! We went to have our 20 week ultrasound today with our perinatologist. Within 3 minutes they told us our little Jellybean is a girl! I was in tears I was so happy. The ultrasound lasted almost an hour. They did discover that Jellybean's left kidney is larger than it should be indicating some reflux but we are hoping this in an isolated anomaly and that it will correct itself before birth. We may know a little more in a month when we go back to see him. Other than the kidney Jellybean appeared healthy! Here are some of the 3D pictures that were taken today.

This picture is a little hard to make out but it is actually a big mischievous ear to ear smile. The ultrasound tech was laughing so hard! We couldn't believe that she caught such a good shot. Say "CHEESE", Jellybean!!!

Jellybean Update

2008-12-31T16:31:00.003-05:00

It has been an interesting week as far as Jellybean goes. On Monday I went to the doctor because I had some cramping and then I hadn't felt the baby move. They did a quick ultrasound and we saw the beautiful heartbeat and a little leg kicking. It is possible that since I am incredibly sick my focus has been on my headaches and not the sweet little kicking. (about 5 hours after the appointment Jellybean was kicking pretty hard for about 3 hours!!!) The doctor offered to listen to my heart and lungs to make sure the cold hadn't settled in my chest. He lisened to my heart for quite a long time and then asked "have you always had a murmer?". I was shocked by this and he said that it was a little loud for his comfort and wanted an echocardiogram. I went and had that done yestarday. We went back to the doctor today because he wanted to do an ultrasound to make sure the baby was ok. The ultrasound tech pulled up my chart, saw that we saw a perinatologist and siad that she wasn't going to do a full ultrasound because the perinatlogist would do it. I thought it was ridiculous that she wouldn't follow the doctor's orders. So we weren't able to find out the sex of the baby today. We do have a detailed level 2 ultrasound in 2 weeks so hopefully we'll find out then. THe good thing though was that there was a perfect amount of fluid and on the scan we saw a HUGE stomach! These things are exciting for us because I had way too much fluid with Jack because his esophagus was in 2 pieces and we never saw Jack's stomach on an ultrasound because of the esophagus as well. Seeing that big round stomach was an absolute miracle to us.

Here are some pictures from the ultrasound today!

Another trip to the ER....One month later

2008-12-24T11:36:00.002-05:00

Well, exactly a month to the day from our last trip to the ER we had another eventful day filled with medical challenges. Jack went down for his nap as usual but then had some difficulty breathing. I went in to check on him and he was limp and unresponsive. We couldn't wake him up. We called 911 and did our best to suction and had to so some rescue breathing. He was going from rigid to limp quite frequently during the whole ordeal but was ok when he finally woke up in the ambulance. Once we got to the ER he had a full seizure that required some serious medication to sedate him. They had to give him a double dose because the first one didn't bring him out of the seizure. They told us he'd be out for about 8 hours. Well, 3 hours later he was awake and wanting to eat my fruit. They did a CT scan that looked normal so they transported us to Strong for a neurology consult. They did an EEG yesterday before we left the hospital. I wish I had my camera because I know that tomorrow I won't believe that he slept through having his head marked, the probes attached and then being taped up. They came to give us the results and told us that there were some patterns that would be abnormal on an adult but were normal for some children. They want to follow up with an MRI in the next month.

On Tuesday we were supposed to go to the grocery store after Jack woke up from the nap. Well, the seizure kind of messed up that plan. The problem was that all grocery stores closed at 6 pm on Christmas eve and I was missing at least 1 ingredient in every single recipe for our Christmas dinner. The doctors were really dragging their feet getting together the discharge papers so we finally went out and told them that we wanted to get to the store before it closed. They finally got everything together and we signed the discharge papers at 5:05 pm. We ran out of the hospital and drove to the Wegmans in Rochester. We had never been there so we had to manage the chaos and still find everything we needed. The funniest thing though was that the markings from the EEG, which were 20 bright blue crosses, were still on Jack's head! It did not come off with a warm washcloth like they promised. We had to wait until we got home to scrub his head with shampoo. I can't imagine what people were thinking at the store!

We then had an uneventful 2 hour drive home. Jack, surprisingly, stayed awake the whole trip playing with his toys and reading every single book we had in the car. We were all so thankful to be home before Christmas morning.

It is amazing how quickly Jack recovers from his various episodes. He usually falls really hard and then bounces back very quickly. I mean, back in June, he was life-flighted and was moments away from being on life support and 4 days later he was discharged straight from the PICU. He is truly an incredible miracle. We are so lucky to have him for our son. Jellybean will have a wonderful brother to look up to!

Another trip to the ER

2008-11-27T21:14:00.002-05:00

We had quite a scare on Tuesday night. Jack woke up at 11:30 with his teeth hurting so we watched a blues clues and I went to put him to bed at midnight. He got upset when I got to the crib and pointed to our bed. I knew that he just needed to snuggle. I put down pillows and blankets in case he rolled out of bed. Well, about an hour later he did fall out of bed. He didn't hit anything and landed on the pillows as expected. He let out a cry and then all of a sudden it stopped. I was holding him when it happened and he just went completely limp. I tried to wake him up but he just layed there in my arms. We ran out to the living room where I called 911. I started yealling at him, shaking him and pushing on his chest. I was about to start CPR when he let our a huge cough and started to breathe again. It took him a while to come out of it but as soon as he did he wanted blues clues. By the time the EMT's got here he was sitting up watching TV. We still went to the ER to make sure that he was ok. They observed him for about 2 hours and we were cleared to go home. It seems what happened is that his teething is causing an increase of secretions and when he fell out of bed it scared him to a point that the mucous plugged his airway and he needed some agitation to get it loose. It was a very scary situation and it was even harder that Philip was at work and I was alone. I am so thankful everything turned out the way it did. We are so lucky.

fish

2008-11-22T10:57:00.003-05:00

Jack has recently discovered how fun fish can be. After 2 years of showing him our fish in a bowl he has finally realized what he is looking at. He now will make an "f" sound and point to the fish. Last night Jack saw for the first time the swimming fish on the screensaver. He was so excited about it! He actually climbed off Philip's lap and on to the computer desk to get a closer look. The entire time he was squealing and making the "f" sound. It was really cute!

Just one Jellybean!

2008-11-18T18:26:00.002-05:00

We had our appointment with our high-risk OB today and got some very wonderful news! Jack is only going to have one baby brother or sister! Some of you know that we have been worried about it being twins because of my size and feeling the baby move so early. Thankfully Jellybean is just making me fat and is incredibly active. We saw proof of that on the ultrasound! It lasted about 15 minutes and Jellybean was kicking, rolling, and literally jumping all over my uterus! We were able to record the ultrasound on DVD so we can watch it over and over. It is so amazing to see this tiny little baby moving so much. At one point Jellybean made up a game called "Kick the Cord". He/she got the cord wrapped around the arm and then tried to kick it off. At least our little one is creative because with 27 weeks to go Jellybean could get pretty bored in there. We hope to scan and post the pictures tonight but we may not get them until tomorrow. Check back again!

Home from Texas

2008-11-16T19:18:00.003-05:00

We are finally home from our wonderful trip to Texas! We had a great time visiting Grandma and Grandpa! Jack wasn't feeling his best while we were there but we were still able to do some fun things. He started to cut his first 2 year molar the day we left for the trip so he felt pretty uncomfortable most of the time. Jack's favorite thing to do on the trip was "GO!". He would walk over to the door, point at the car, and yell "GO!". If we didn't scoop him up and take him somewhere he would get very upset with us! We made a lot of trips to Sonic and Chelsea's which made me very happy! We were also able to go to the Houston Zoo and see the monkeys. Jack's eyes really lit up while looking at all the animals! We didn't get to see all the people we wanted to because of Jack not feeling well so I'm sorry if we didn't get to see you. We had so much fun visiting with everyone, including Great-Grandma Guernsey!

Jack is so glad to finally be home and spend some time with daddy. We've got a big week coming up with lots of appointments for Jack and the baby, who we now call Jellybean. We'll be in Syracuse most of the day tomorrow and Wednesday for Jack and then in Elmira for a 3 hour appointment on Tuesday and in Ithaca for a 3 hour appointment on Thursday for Jellybean. We are very excited for the appointment on Thursday because we will have an hour long ultrasound! It is going to be wonderful to finally see our baby!

We've also got a lot of Thanksiving shopping to do. I'm doing my usual traditional Thanksgiving dinner for 12 to feed Philip and I. We are hoping to have guests this year but we're still not sure. If not we'll have our usual leftovers for a week!

All in all, we had a wonderful week last week and we have a busy week this week! I hope we are all able to survive!!!!

Happy Halloween!!!

2008-10-31T21:18:00.003-04:00

Happy Halloween everyone!! My sweet little dinosaur did such a great job! We went this afternoon and visited our good friend, Teagan, in the hospital and then went to trick-or-treat at the NICU. There were so many wonderful nurses that came out to see Jack in his costume. Then we stopped by a few friend's houses to visit and Jack did great for the most part. At our last stop he fell asleep in daddy's lap. The most peaceful dinosaur I've ever seen!

Long Overdue

2008-10-27T20:19:00.003-04:00

We have such a busy life the past 6 weeks. There has been so much going on. First of all Jack has been relatively healthy. We went through a period where Jack had horrible diahhrea caused by antibiotics. It went on for weeks and Jack ended up losing 3 pounds. We found out that the antibiotic destroyed his intestines. It caused a permanant lactose intolerance which has put a bump in the Blenderized diet. He's now back to a full BD using Lactaid instead of milk and we have found some creative calorie boosters. He has gained 1 pound back and is still gaining.

We have had many doctors appointments and have been traveling to and from Rochester and Syracuse a lot. Sometimes I feel like I live in my car. I guess it's good that I love driving it!

Jack has done so many new things in the last few months. He began and continues to walk which is a HUGE accomplishment! He is now really interested in food. He literally will attack anyone that has food. He also sees Philip and I sitting at the table and he wants to be right there with us tasting the meal. He gets frustrated because he wants to use the same forks that Philip and I do. We just can't believe how far he has come with his eating. He still hasn't learned to swallow food but he's getting really brave in the types and textures of food he's trying. He is also addicted to Blue's Clues. He wakes up every morning and all he wants to do is watch an episode while eating his breakfast. I've bought him a Blue's Clues book on Amazon and I can't wait for it to get here!

We have some big news in our family. Jack is going to become a big brother in May. Things are going well in the pregnancy. We've got the normal pregnancy stuff and I'm already showing. We are very excited to have a new baby on the way!

Here are some pictures from this summer and fall.

Make an on-line slideshow at www.OneTrueMedia.com

Hurricaine Ike

2008-09-15T21:52:00.002-04:00

The effects of Hurricaine Ike has now reached Ithaca, Ny. No, not rain or wind but the reality that we will not be visiting Houston next week. My family was suprised to find that they were one of the firsts to get their power back. Everything was right on track for our trip. Then today a transformer blew because their neighbors allowed their bamboo to overgrow and it touched the transformer. Because of this 10 houses lost power, my parent's house included. There are still millions of people without power in Houston so there is a long list of areas to restore power. They are trying to service grids with the greatest amount of people first. Because they had thier power restored and now there are only 10 houses without power they are last on the list. Their power company is estimating 2-3 weeks before they can get their power restored. We were supposed to go down a week from tomorrow. This is such an upsetting turn of events. We were really looking forward to our visit. My parents haven't seen Jack since July and they wereVery excited to see him walk for the first time. The video just doesn't do it justice. We are hoping the airlines will be able to reschedule our flight. If not, I don't know what we'll do. If Jack wasn't so medically fragile we would go down anyway but he requires power to be able to use his pump, his nebulizer, and charge his suction pump. All things needed to save his life. I'm praying for a miracle.

Preparing for a Party

2008-09-07T21:25:00.002-04:00

Wow, what a week we have ahead of us. Tomorrow we have 3 therapies and an appointment with the dietician. Tuesday we will be in Rochester all day for pulmonology. Wednesday we have 3 therapies again and then Thursday we are back in Rochester picking up Philip's mom. During this time I'm supposed to prepare everything for Jack's birthday party on Saturday. I'm busy busy busy!!! I'm starting to work on Jack's year 2 montage. I hope to get it done by his birthday but if not I will post it as soon as I can.

Blended Diet

2008-09-02T12:04:00.002-04:00

We've made some significant changes to Jack's diet! He is almost completely off formula!! We are now giving him real foor blended up through the tube. Anything Philip and I would eat now Jack can eat too! It is such a simple concept but the doctors are so against it. Our pediatrician knows me so well that he agreed to help me through it because he knew that if he disagreed with me I'd still do it anyway. He is now interested in learning more about it. Jack's health has significantly improved since starting real food. We started by adding some applesauce to his formula and over the last 2 months we have transitioned the formula out and now he is on all food during the day. He still gets some formula at night but we have significantly decreased it and it won't be long before it is gone altogether. We've now gotten to the point where we had to purchase a commercial grade blender to get the mixture smooth enough to go through the tube. Luckily for us, the company offers a medical discount for tube fed children. The blender still cost over $300 but now we can make appropriate meals for Jack.

I've been keeping myself busy cooking and freezing all sorts of yummy meals for Jack. They are so delicious that I want to eat them! Right now Philip and I joke that Jack eats better than we do! Just yesterday I made him some fruit bars that had apples, blueberries, cranberries, carrots, and oats. Then I made some potato, spinach, leek puree, and some pasta stars with tomatoes and cheese. It was so much fun!

I really think that for the first time in his life he truly feels food. It has to feel so much better having a full belly of food and not liquid.

Any guesses??

2008-08-23T20:25:00.002-04:00

We got the bill for Jack's Life flight today. We've been witing a long time to see how much a life flight costs. We were blown away with the figure! Any guesses on how much a 74 mile life flight costs??? $20,000!!!!!!!!!!!! Some people don't even make that in a year! That breaks down to $551 a minute! CRAZY!! We are so very fortunate to have a wonderful insurance plan that pays for it 100%. Let's just hope we don't have to have any more of those!

Are you ready for this??

2008-08-22T21:02:00.002-04:00

Ok, We've been holding off on posting because we've been waiting for some special pictures to go along with a post but this one can't wait. We waited 3 days to post this special news because the last time we posted right away the behavior did not continue. Well now we have seen this "behavior" for 3 days in a row! Jack is now consistantly walking!!!!! It started on the 20th. We were shocked to see him let go of the tv stand and walk over to us! We didnt freak out on the inside but you better believe our insides were doing kartwheels. We felt that if we made a big deal it would hinder the progress and we were right. He acted like he had been doing it his whole life and it is no big deal. He continued all day and even carried his container of play food all the way across the room! We are just completely shocked! Tonight he walked all the way across the house, opened the back door himself, and stepped right out onto the back deck to get his daddy! It was incredible!!!! Absolutely incredible!!! We are so so happy. It has been a long 23 months but all the therapy and working with him has been worth it! We truly believe that the walker has helped him to gain his balance and confidence. He will still need the walker in new and unfamiliar places because it helps him with his depth perception and keeps him safe but now we know he can do it on his own!!! Enjoy the video!!!

I finally have time to post!

2008-07-03T20:24:00.002-04:00

Now that Jack is doing well and we have grandma and grandpa to run around with Jack, Mommy finally has a minute to update the blog! I didn't bring my computer to Texas with me so I'll have to update about our wonderful trip to Illinois when we get home. I can, however, update you on the crazy antics of Jack in Texas! For example, Philip's wonderful aunt Tracy and uncle Neal drove up to spend the evening with us. We had a wonderful time visiting and had a wonderful dinner (thanks, mom!!). Towards the end, Jack went out the front door and I took the walker with us and put it in the cul-de-sac. Jack didn't want to be out there he wanted to be on the sidewalk so he took his walker right up to the curb, lifted the front wheels up and took a step up onto the sidewalk!! I ran to get the camera to catch it on video in case he did it again. He did!! He also tried to go down off the curb but needed a little help to do it. He is amazing!!

We've been up to a lot of other things too. We went downtown to an area called Harwin. They have a lot off little shops that sell knock off stuff. They have tons of little jewelry store that are just overwhelming! I was looking for some jewelry to go with my dress for the wedding we're going to on Saturday. I found a beautiful set! I also got a pendant, a pair of earrings, and a ring. We had a lot of fun. We've also visited with Jack's Aunt Laura, Aunt Tina (my best friends), and Miss Sandra. We had a wonderful visit and good Lemon cookies (again, thanks mom!). THe first day we were here I went to get my hair cut. I knew I wanted to get a little cut off but I wasn't sure how much. I told her about where I wanted it and she made the first cut. She paused, looked at the lock of hair and said, "oh, that's too bad". I knew exactly what she meant and I asked, "how much more". She said, "2 inches". I told her to just do it. I was able to donate my hair to Locks of Love! Plus, I got a really cute hairstyle!

Tomorrow we are going to go and see my brother's new house and then go and see the fireworks out on the lake. Then Saturday we are up to Dallas to see my other brother's new house and to go to the wedding! We've got a lot of fun stuff coming up!!

A rough time

2008-06-24T08:17:00.001-04:00

Suprisingly, we are now home with Jack. It all started on Wednesday. He fell asleep in my lap and had a very hard time getting a full breath in. Luckily, our nurse was with us and she went with us to take Jack to the doctor. By the time we got there he was ok. His sats were fine and he was breathing ok. The dr. suggested more xoponex. That night I stayed up to listen to him. He did have a hard time. The next morning he was still having trouble so I took him into the Dr. and they called an ambulance to take him directly to the hospital. Once there they set him up with oxygen, xoponex, and blood work. He was working so hard to breathe that he couldn't even open his eyes. He layed there limp in our arms not being able to breathe. this hospital is awful. There is never a doctor on the floor, just nurses and the dr is on call. We did not see a doctor once even after repeatedly demanding. The dr. was in 3 back to back c-sections and couldn't come ot assess the situation! I started to throw a HUGE fit and they called a different doctor and I could only speak with her on the phone. I asked for Jack to br transferred to Rochester because we didn't feel comfortable with his treatment there and she denied the request. She told us the Dr. on call would have to make that determination. Once he finally came in Jack was doing worse than ever. His o2 sats were fine with the oxygen but his breathing had slowed and he was retracting horribly. I was terrified. I thought I was going to lose him. I started to take deep breaths in his hair to remember how he smelled. To say I was terrified was putting it lightly. The doctor called rochester for a life-flight but we had to wait for them to assemble their team and then fly to us. They told us that once the team was there they'd intubate and take him to the PICU. Once the transport team arrived you could see the looks on their faces. They were upset they hadn't been called sooner. One guy did an arterial blood gas and checked his IV to give a sedative and the other gave an inhaled medication called Racemic epinepherine (sp?). He did two treatments back to back. within 2 minutes Jack was opening his eyes, not retracting as much, and wanting to read a book! The respiratory therapist at the hospital quietly mentioned to us that the last shifts therapist had been trying to get the doctor to order that same medication all day and he refused. They took him without intubating but couldn't make any promises about what would happen during the flight. We were not allowed to ride along with him. It was so incredibly hard! They also had some severe weather to deal with and didn't know how the flight was going to go. We had to get in the car and drive 2 hours to Rochester. It was 11:30 p.m. by the time they took him and so we didn't get to the hospital until well after 1 am. To our suprise Jack was not intubated when we saw him! He had high flow o2 and they were doing breathing treatments every 30 minutes. There were lots of different drugs and the combination of them worked. He was still retracting and had stridor but it was not nearly as bad as it was before and they were able to control it with the Racemic. They weren't able to tell us what was wrong. They said it was probabl some sort of virus and the best they could say is acute respiratory distress and reactive airway disease. He progressively got better and by yesterday he was completely restless. They had him hooked up to all the monitors and he had an IV in his foot so he couldn't get down to try to walk. they finally started him back on his food at full feeds and he tolerated it so we were able to d/c iv fluids and they removed the foot board so he could walk. He felt so good to get up! He ran around the PICU unit! During rounds that morning they decided that if we had lived in Rochester they'd let us go home but since we had a long drive they wanted to keep him another day. When we found out that we were like "what does a 2 hour drive have anything to do with going home???" they said they wanted him to be spaced out on the xoponex a little more. Ummmm...he's getting xoponex every 4 hours and it only takes 2 hours to get home! Plus, we had our portable neb in the car! After we explained the logic to the doc he agreed to let us go home. Jack had a great night! It has been a long long time since he had breathed that quietly at night. Today he was running around outside and going down his slide. He's back to his normal no nap self! We are so incredibly thankful for the way everything turned out. It could have been so much worse!! Jack has incredible resilliance. He's just a true miracle!

Thank you all for your thoughts and prayers. It was a scary time in our lives. So many of you have been there and know what it is like. Thanks for all the support!!!!!!!!!

Jack's Walker

2008-05-29T21:39:00.002-04:00

Jack's PT was finally able to find a walker Jack's size. The shopping cart was working well but it wasn't as stable as it should have been. Jack wasn't too interested in it at first but yesterday he really took to it! We started to put him in it every time he took our hand to walk. It clicked yesterday that he can actually go where he wants and he doesn't have to try to convince mommy and daddy to follow him. We took the walker last night the The Boatyard Grill to celebrate our anniversary and Jack gave us the best present ever! He walked around on the deck of the restraunt in the walker! It wasn't busy but the people that were there seemend to enjoy how excited he was about it. We also learned a valuable lesson. We have to take away Monkey in order for him to hold on with both hands. He seemed to be ok with it. Later that evening we took the walker to Wegmans and let him go. He walked around the store for half an hour on his own! He even followed us as we shopped! It was so cute! We are so proud of him!

Today I took him outside and he walked in the walker on the driveway! I couldn't believe that he actually did it! We also took it to the library and the park today. He loves his new found independence. He acts like he's been using the walker for months. As soon as he figured it out he took right to it and went off on his own! Today at the park I was talking with friends while Jack was walking and he started going down the path paying no attention to how far he was getting from me! He just kept going and as I came up behind him he did a little jump step and tried to get away! It was really really cute!!

This is the best thing we could have done for him. We have seen an amazing change in his personality. I am so happy he feels so independent!

Sleepy Boy

2008-05-29T21:18:00.002-04:00

Last night Jack was a very tired boy! He had woken up at 4:45 and went the whole day without a nap. By 5:30 he was pretty much gone. Philip and I, the good parents that we are (wink wink), decided to video tape him. He wanted to watch Moose so bad but he was just too tired. It was super cute! Check out the video!!

Surgery Update

2008-05-15T17:30:00.001-04:00

So here's what happened...Jack coughed all night long. In addition he woke up screaming at 2 am. I immediately picked him up and his little body was shaking. He calmed down for a minute or two but then started this involuntary jerking and screaming. We weren't sure if it was pain or a seizure or what. It happened a few more times and then he fell asleep.

When we got to the hospital this morning there were green rivers of snot running down his face. No matter how often we wiped the rivers kept flowing. When we got up to the reception desk on the surgery floor the nurses took one look at him and went to get the anesthesiologist. He came in and said he was uncomfortable doing the surgery in his condition but he wanted to speak with the surgeon before they sent us home. The surgeon wanted to see Jack before we left but he was in surgery so we were going to have to wait an hour. They had a blues clues movie on for Jack so we said OK. He came in about 40 minutes later and agreed with the anesthesiologist and declared the surgery cancelled. He wanted to talk to our pediatrician to change his antibiotic. So while he was off doing that the nurse gave us some pedialyte to give to Jack so we did a bolus. About 30 min. later the anesthesiologist (I haven't mentioned that he didn't speak english andwe couldn't understand a word he said) came in and told us that they were still going to do surgery but a different one. He wasn't able to give us any details he just wanted us to give consent. We of course refused. We weren't going to give consent to an unknown surgery when a few hours earlier he was very uncomfortable giving him anesthesia. We wanted to find out what the procedure was. I went out and paged our pediatrician directly because I wanted to know what they talked about. Our pediatrician wanted him to have an ear fluid culture which needed to be done under anesthesia. He believes that even though the infection is in his sinuses the bacteria would show up in the ear fluid. When we finally talked to the ENT he said that if they were going to put him under and make a hole in his ear drum to collect the fluid they might as well slip a tube in there. We started to talk about his secretion issue and I wanted to know what hadchanged in the last few hours to make them think Jack would be fine. A few hours before they were adamant that it was not safe to put him under. Why the change? Our ENT said "I'm going to step out of my doctor role for a second. Do you want my personal opinion?" Of course, I said yes. I completely trust him. He said "If this were my child and I was in your shoes I would not do the procedure". That was enough for me. He said that right now we are managing Jack's secretions at home and it was clearly not affecting his lungs. The ENT said that if we did the procedure today we would have a 20% chance that his respiratory status would be compromised. 20% is a lot! So we packed up Jack and brought him home.

I hate having that feeling of knowing that you have to make a decision and neither option is a good one. Luckily in this situation we had the option to walk away. I know Lesley was just talking about this with Ameile's trach. It is so incredibly stressful. Before we talked to the ENT for the last time the anesthesiologist was sort of pressuring a decision. Philip and I got into this huge fight right there in the room because I took something he said the wrong way. When you have such an intense stress you snap easily. We kissed and made up. :-)

One thing that did really bother me today was that the very first time the ENT came to see us he said his patient was still asleep on the table. The same thing happened with Jack's last surgery. The surgeon came out of the OR to discharge us when we had become friends with the little boy who he was supposed to be operating on. We saw them take him to the OR and at that time he should have been in the middle of the procedure. I can't believe a doctor can leave the OR like that! I know there are other people there but I never want to theink about the surgeon leaving Jack on that table. I think back to all his other surgeries and wonder how many times the surgeon left him. It is so hard to think about!Anyway, Jack is now home and doing great. They are going to try to reschedule the surgery to be in 2 weeks. We'll see what happens.

A Big Boy Haircut

2008-05-11T16:23:00.004-04:00

I lost my baby boy today. We gave him his first real haircut today. We had trimmed it several times but it really needed to be cut. We bought new hair clippers today and when we turned them on they were incredibly quiet. We thought we'd try it on Jack. We got part of the top done but then was freaking out too much so we had to stop. He looked really funny while Philip and I decided what to do. We turned on Noggin and tried to cut it with scissors. As son as Moose and Zee came on we were able to make some real progress and we could actually do a good job! It still needs a litle polishing but we decided to get it while he's asleep. He doesn't look like the little boy he did this morning. He now looks like a handsome man. It almost made me cry!

Big Man Shopping at Wegmans

2008-05-09T21:55:00.006-04:00

Our PT was not able to find a walker for Jack to try. Instead, she brought this Little Tikes shopping cart. Jack doesn't really use it much at home so I had the idea of taking it to the grocery store. Our OT decided to come with us when we gave it a try. We went to the furthest aisle with the least people. Jack got right down and started to push it. He used one hand to push the cart and one hand to hold on to Monkey. He didn't like to be in the quiet aisle. He wanted to be where all the action was! He walked around the store with minimal assistance for almost 45 minutes! It was incredible! At one point he even let go of the cart and took 5 independant steps to reach a Tide display!!! I was so proud of him! We'll be buying one of these carts for him for sure!

Sorry this video is sideways. I keep forgetting that you can't turn it once it is shot. It's still too cute!!!

A sad time

2008-05-09T21:50:00.000-04:00

Mommy, why did you put me in this car???

Jack at the park

2008-05-09T21:32:00.003-04:00

Again, this is before Jack got really sick. It has been a long time since I've been able to post!! Jack really enjoyed going to the park. We took a long walk around Cayuga Lake while Jack slept and then we went to the toddler playground. Jack LOVED playing on the structure and even sliding and walking on the woodchips! I was not in the park with my child! He was someone else that day! It helped they had musical chimes to play with. He played for about half an hour and then we went home. He slept really well that night!

Cornell Vet school open house

2008-05-09T21:06:00.004-04:00

Before Jack got really sick we were able to go to the Vet school open house. While at the petting zoo Jack didnt freak out once! He even reached out to touch a baby chick!! He was really good as long as he was holding his moracca!

Cute pictures before the shots...

2008-05-09T20:42:00.001-04:00

Our hospital stay

2008-04-19T03:17:00.002-04:00

Well, we are in the hospital. Jack has had a cough for some time now and 3 weeks ago it started to turn into an infection of some sort. We treated with 2 different oral antibiotics and antibiotic injections. The injections worked for 4 days and then everything came back worse than before. Today at our Dr.'s appt. it was decided that we were going to have to be more aggressive and and admit him to the hospital for IV antibiotics. They did a CT scan of his sinuses which revealed a terrible case of sinusitis which apparently is resistant to antibiotics. The poor baby is so good through all this. It could be anywhere from 4 days to 3 weeks. Hopefully if it is going to be longer than 4 days they will be able to find a PICC line small enough for him to replace the IV and then we can do the treatments at home. I really hope so because the treatments are for 15-20 minutes a day and then the rest of the time is spent just hanging out and having the nurses bug him every few hours for vitals. I just can't wait to be home. The really bad news is that they had to put his IV in his foot. Those of you who really know Jack know how that is the end of his world. He spends almost his whole day on his feet standing at his toys and making mommy walk around with him. Today he slept all afternoon but tomorrow will be a different story. Wish us luck!

Unexpected Joys

2008-04-03T19:33:00.002-04:00

So Jack is now 18 months old and is not walking independently. We got to the point where we started to think that a walker would be beneficial to him and may give him the freedom to be mobile. I asked the CHARGE list about their experiences and got some wonderful advice in return. Then, tonight, Jack decided it was time to prove mommy and daddy wrong. He took many steps on his own and kept his balance most of the time! I was able to catch a good portion of it on video to share with you all. I hope you enjoy it and realize what an accomplishment this is for Jack.

Marathon of appointments

2008-03-18T21:51:00.002-04:00

Yesterday Jack and I headed to Syracuse for 3 appointments in a row. First we saw the nutritionist and the GI. They were really impressed with how Jack is growing. I just had a hard time with his percentage on the growth chart. I see him day to day and he seems sooo big to me! It's almost crushing when I think about my big man and hear the doctors tell me that he is only in the 5th percentile. I really expected more. At least he is still growing. We did have some progress though. We have switched him off of Neocate, which is an elemental formula with all of the protiens broken down, to Vital Jr., which is only partially broken down. So far he has done really well on it. The hope is that if he tolerates the new formula for 6 months then we'll be able to switch him to pediasure. His new formula is really easy because it comes pre-mixed in 8 ounce cans. It is a french vanilla flavor which is a nice switch for us from stinky Neocate. It smells so good I would even drink it. It smells like vanilla cream cookies. yummy!

After those appointments we were able to go and visit all of the wonderful nurses at the NICU who cared so lovingly for Jack. It was so wonderful to see everyone again and for everyone to see Mr. Jack in his handsome man glasses. He has overcome so many obstacles so many people thought would keep him down. It's wonderful for all of the people who brought Jack through the hardest times to get to see him do all of his big boy tricks. I love all of you guys!!!

Then, we went to the Nephrologist (which is Jack's kidney doctor). As usual, Jack freaked out when they tried to take his blood pressure. We got no news but they did discontinue one of his medications. They are going to try to get into the OR on April 9th while he's having surgery to take an accurate blood pressure. Who knew a blood pressure could be so challenging but that's just Jack's style.

Chocolate tasting party

2008-03-18T21:32:00.002-04:00

We had an amazing chocolate tasting party tonight. We had a wonderful group of friends over and Life's So Sweet Chocolate catered the sweets. We had Bailey's Irish cream truffles, Chocolate dipped peanut butter pretzles, White chocolate dipped pears, Aztec truffles (with chili powder), dark chocolate cocoa truffles, dark chocolate dipped dragon fruit, and berry clusters with dark chocolate, raisins, golden raisins, dried cherries and currants. The chocolate was amazing, the conversation was great and overall it was a wonderful night. Thank you to everyone who came!!!

The last 2 weeks

2008-03-14T18:20:00.009-04:00

Sorry I haven't been able to post for a while. We have been living crazy lives and then there is always the fact that Jack Loves the computer. We'll start with two weeks ago and move to today. Enjoy all the pictures and videos!!

A New Sweater from Grandma

I'm such a handsome man!!!!!

I can't figure out how to turn this picture but it is still cute!!!

Thanks for making me this very handsome sweater and hat Grandma Sharon! I really really like it! The Monkey buttons are really cute too!

Grandma and Grandpa Mac Came to Visit!

My mom and dad came for a wonderful visit this past week. It was wonderful to have my mom's cooking and not having to worry about doing the dishes or the laundry. It is wonderful that my mom comes all this way and still helps me around the house and does the grocery shopping and cooking. We had a wonderful time playing cards and doing things around Ithaca Even though we had 2 ice storms and spent a whole day without power. I'm glad you didn't freeze too much Mom and Dad!!!!

Another great thing about my parents coming is that they brought us 50 pounds of beef. That's right.....50!!! Beef is VERY expensive here in NY. We were at the grocery store while they were here and we saw a package of 2 NY strips for $21. My parents live in Houston and can get them for $1.99 per pound on sale. So, They stock up their freezer in the weeks before they come and bring us as much as they can fit in their suitcases. Hopefully it will last us until June when we go down and we can bring some back with us!

We're on the way to the airport to pick up Grandma and Grandpa!!! I'm so excited!!!

Thanks for my new concrete mixer Uncle Dennis!!!!

I love reading this story with my Grandma!

I really love shaking my new moraccas and playing with my other instruments. Thank you!!!

Thanks for coming Grandma and Grandpa! I had a great time!!!!

Another Trip to the ER

On Monday the 10th Philip woke me up at about 6 am because Jack's balloon in his button had burst sometime in the middle of the night and had come out. Jack's jammies and bed was soaked with milk. We woke him up and brought him out into the living room to try to get a better look at everything. Jack's stoma (the hole into his stomach) acts like your ear when you first get it pierced. Once you take out the earring the hole starts to close on its own. His stoma is the same way even though it has been 16 months since he got his tube. When we finally got a look at it we could see that it was closed. We tried for about 15 minutes to get the smallest tube in but we couldn't. The tube we had at home was not stiff enough to push through. We had to get him to the ER fast because if the hole completely closes then Jack has to have surgery to re-open it.

They were really good about getting us into a room right away. However, the nurse practitioner would not help Jack until we gave him his full medical history. I'm sure how all of you who've been in this situation know how I was feeling. The momma bear was hungry and a juicy human was messing with her cub. He told me it would take hours for it to close all the way. IT HAD ALREADY BEEN HOURS!! I looked at him and told him that if he wasn't going to help us then I'd just have to do it on my own. (I didn't say it that nicely) So I grabbed the 8 french tube and started to dialate the hole. Now, for those of you who are not familiar with tube sizes they go by even numbers. An 8 French tube is about the size of a piece of cooked spaghetti. Jack's stoma was a 12 French which is a little bigger than a pipe cleaner. After a lot of trying, I finally felt the skin seperate and the tube slid in a little further. We kept trying and trying and slowly we were able to get the smallest tube in. From there we had to wait about 15 minutes and then try to put in the 10 French tube. Philip, who has never changed a tube before, was able to dialate the stoma to a 10 French. Keep in mind at this point the nurse practitioner was still not helping and we had not seen a doctor. I was furious! Since when do you go to an ER and have to treat your child yourself? We had to wait another 15 minutes before we could try to get the 12 French button in. Shortly before Philip and I were going to try the doctor came in. He saw Jack's button laying on the bed and asked "So, What is that exactly?" I wish I could have seen my face because I am sure that my jaw dropped open. How can a doctor not know what a button looks like? He had no idea how they even worked and asked us a whole bunch of questions about it. Then he proceded to tell us that he could put it in for us. Philip just looked at him and said, "No, I think we can get it in if you'll just hold him down". It was pretty funny. Here we have this ER doc holding Jack and the parents are performing the procedure. We were out of there in 2 hours, which is record time for the ER. It just goes to show you that the doctors are the ones that hold you up. The only good thing about the trip was that we left with 7 new tubes of various sizes so that next time we'll have brand new tubes with rigidity to get in there. After we got home Jack took a nap when we got home but he was a wonderful happy boy the rest of the day! We even took him to get his pictures taken that afternoon and they were the best we've ever had taken!

My New Water Table!!

I bought Jack a Sand and Water table the other day even though I know that he hates water more than anything in this world. I was certain I was wasting my money but out OT thought it was a good idea for him to be able to try and I agreed. The day I bought it out OT came and I put it together while she worked with Jack. Finally he noticed I was doing something and came over to check it out. He was banging his hands in the dry table so we thought we'd see what happeded when we added warm water. To our suprise Jack stood there and splashed his hands in the water! He played for 45 minutes! We were SHOCKED! This child could not be my precious Jack who hates the water! The table came with a small boat and a bulldozer. He really loved playing with the boat but was adamant about not having the bulldozer in the water. He'd get upset if we ut it in and then throw it out! He's so silly! I was able to take a video and some pictures of his first time playing with the table!!

Glasses!!!

I have been working so hard to get Jack to wear his glasses with no success. But then on Wednesday we had a session with our vision and occupational therapists. They made him put on his glasses and after about 15 minutes of protest they got him distracted and he wore them for about 30 minutes. Then, yesterday morning I put them on him with little protest and he wore them all day!!!! He did the same today! It seems he has realized they actually help him!

Daddy's Birthday

2008-03-02T19:50:00.002-05:00

Today was Philip's birthday. We are exactly one month apart so now he's finally in the quarter century club. We celebrated the day by having homemade cinnamon rolls when he woke up, going to the inaugural meeting of our support group, relaxing, and having a wonderful dinner. Later we will enjoy the pumpkin swirl cheesecake I made for him! I think he had a great day.

More on the support group... A few parents recieving therapy services from EI expressed a desire to meet other parents with children with special needs. We were finally able to meet the wonderful families today. Most of the kids played well with each other. All except Jack. He had a problem with sharing his toys and decided he'd rather be in crazy man mode than play with my new friends mode. It was ok though. Hopefully he'll play a little better next time. It was just so nice to be able to meet some other people who knew what it is like to have a medically fragile child. It was interesting to find out that two of the families had met while inpatient at the hospital and we had met one of those families at the doctors office and now we are in the same group! Small world! I can't wait for our next meeting!

Sign Language!

2008-02-26T19:37:00.002-05:00

Last Friday Jack started to use his first sign! We've been working on many signs since he was about 3 months old and finally he signed "More"!! He didn't want more but he signed it! He's been doing it a lot in the past few days but we haven't been able to catch it on camera until today. The most exciting part is that while on camera he signed his second sign for the first time! He is now signing "all done"!!! We'll still have to work on the meaning but it is very exciting to see him making this progress! Now we're working on ball, kisses, play, and others. I hope the progress continues!

climbing!!!

2008-02-26T17:07:00.002-05:00

Jack has been making great strides in therapy and working with mommy. He has been learning to climb. He wasn't very interested in it at first but once we found a spot where he was truly motivated he picked up on it fast. We started by putting his steps at the end of our bed and letting him climb up. He loves to play on the bed and was excited to try to get up there himself. Then, on Saturday, I was cooking in the kitchen and Jack climbed up the steps into our arm chair to be able to watch me. He is doing so well! In this video we are working during OT with both the steps and a wedge. We even had a little game of peek-a-boo! I couldn't get the video to turn the right way on screen but it doesn't seem too bad. Way to go Jack!!!

A New Sweater!

2008-02-26T16:13:00.002-05:00

My wonderful, amazing friend knitted this beautiful sweater for Jack. He is so cute in it!!! Thanks to the talented Miss Ashley!!!

Glasses failure

2008-02-26T15:11:00.002-05:00

Mommy, I really, really, really don't like my glasses!!!

But Jack, Monkey loves glasses!!

Jack's new glasses

2008-02-26T14:20:00.002-05:00

Jack got his new glasses a few weeks ago from the NYS commission for the blind. We didn't get to pick them out. We will use this pair until Jack is wearing them consistantly and then we'll buy him the cutest pair of baby glasses ever! As of right now the 10 minute nap he was taking in the picture is the only time he's tolerated them. And he was asleep!

A trip to the ER

2008-02-15T17:36:00.003-05:00

Today we had our first trip to the ER for a typical kid thing! Jack fell today and hit his face on the toy storage. He of course was crying and I told him he was ok. Then I saw his face and saw the blood. It seemed that his tooth had gone through his bottom lip. (The crack in his upper lip is from being really dry) I half freaked out. I called Philip and he met us at the hospital. After about 2 hours of waiting in the room for a doctor we finally got seen. This guy was a nut job! He determined the tooth did not go all the way through there was just a cut on both sides of his lip. He wanted to put a little bit of wound glue on the outside because it did look a little deep. He went out to get some of the glue and never came back. Finally we had to get our nurse to get a different doctor and after an hour of waiting she came in and said he didnt need anything. Sheesh! But, we were able to educate the saff about CHARGE syndrome. Once we told the nurse she went right to the computer and looked it up. Then she started telling all the other nurses about it! I thought it was pretty cool. So now we're home and Jack is sleeping on the living room floor. Poor baby!

Dessert

2008-02-09T21:32:00.000-05:00

Tonight I was snuggling with Jack and he fell asleep in my lap. I looked at the clock and it was 8:30!!! Yay!! I looked at Philip and said, "8:30 is great!". Then I reached down and picked a boogie from his nose. As soon as I did, he popped his eyes open, got up and crawled across the room to his learning table. Philip was not happy with me for saying something! :-) Then, a few minutes later as Philip and I were eating some chocolate pudding with a little whipped cream, Jack came crawling over to us as fast as he could. He wanted a taste! Philip grabbed the camera and got a pretty good video of him tasting the pudding. He was sooo cute! He is so incredibly interested in food these days. He wants to have whatever Philip and I are eating. He's doing so well with his swallowing. We just need to get him to take more volume. Right now we are letting him direct the tasting and how much he wants to eat. Luckily he is wanting to eat more and more!

The incredible Jack

2008-02-06T21:32:00.001-05:00

One of my friends Photoshopped this poster. I think it is pretty great!!!

mmmm cheesecake!

2008-02-04T22:11:00.000-05:00

I made the most beautiful and one of the most creamy cheesecakes I've ever made! It was so delicious! As usual, I took a picture to document it as one of my best works of art. It is a Brownie Swirl Cheesecake and I got the recipe from Juniors, a restaurant in New York City. It has a brownie crust, brownie bites mixed in the cheesecake batter and a chocolate cheesecake swirl on top. It took a lot of work but it was well worth it! I can't wait to make my next one. I hope you will all come to my cheesecake bakery one day!!!

TENT!!!!

2008-02-04T21:14:00.000-05:00

Some of you know that we bought Jack a tent for Christmas that he has HATED! He wouldn't go within 3 feet of it....until tonight! We have had it in the living room blocking his way to the kitchen in hopes that he'd learn to tolerate it. Well, tonight we found out that we just needed to tempt him with food to get him to go in. We had cut up an apple, held it up inside the tent and lured him in. It worked! He was hesitant at first but he really wanted that apple! He stayed inside while he chewed on the apple and then crawled through. We figured that would be the end of it but later he went over to it, opened the door, and crawled right through to the kitchen!! It seems our efforts tonight may have cured his fear of the tent! We'll see what happens tomorrow!

2008-02-04T20:22:00.000-05:00

Philip has been working on a project for the American Physical society making a nano scale trophy for a contest they held. He made a series of football fields nested inside one another. The first is 12 millimeters long, which is about 1/2 inch. The second is 120 microns, which is about the width of a human hair. The third is 2.4 microns, which is the size of a single red blood cell. The local newspaper has now done 2 articles about the project. The first made the front page of the Local section but the one published today mad the front page just under the superbowl coverage!!! Here's the link to the article! http://www.theithacajournal.com/apps/pbcs.dll/article?AID=/20080204/NEWS01/802040328/1002

cute, cute, cute!

2008-02-04T20:17:00.000-05:00

I am so cute in my train engineer overalls! Thanks Grandma Sharon!!!

The best birthday present!

2008-02-02T21:26:00.000-05:00

Today was the best day EVER! First, I got to sleep in. Then, I went with 4 of my friends to the spa and had a very relaxing afternoon. Then we went out for birthday dinner at Lucatellis, which is a local italian restaurant. Jack was crazy with the food! He kept clawing at me to get what was on my plate. I gave him a taste of the tomato sauce. He went nuts over it! He kept pulling on my sweater for another bite! He probably had 7 or 8 little bites before it started to come out his nose. He still wanted more! He loved it! It was the best birthday present I could have ever asked for!

Yummy sauce!!

This doesn't taste nearly as good as that sauce!!!

sleepy boy

2008-02-02T13:53:00.000-05:00

Last night Jack was playing before bed and Philip and I were watching a show on tv. All of a sudden we noticed that Jack was being quiet. We looked over and Jack had grabbed Monkey and had fallen asleep knealing at his table. Poor tired baby!

Nebulizer treatments

2008-01-29T21:04:00.000-05:00

We had to restart Jack's Pulmicourt (and inhaled steroid) and his Xoponex (a bronchodialator) today. We haven't had to do a neb in almost 6 months so Jack in not used to them anymore. Jack has had a cough for weeks now and as of yesterday it is accompanied by a wheeze. The doctor wanted us to restart nebs and also do a round of Prednisone (and oral steroid). Jack protested quite loudly this morning when I turned on the neb. So, as any good mother would do, I turned on his favorite tv station, Noggin. I at least got him to tolerate the medicine blowing in his face. Tonight, as Philip was trying to give the treatment, I caught some pictures of him. His favorite, Moose, was on and he was quite mesmerized!

Jack took his first steps!!!

2008-01-26T16:50:00.000-05:00

JACK TOOK HIS FIRST STEPS TODAY!!!!!!!!! It was incredible! He's been doing something we call "controlled falling" where he takes a step or two as he's falling but today he actually took 4 very controlled steps before he went into his controlled falling!! Philip had him standing up and Jack was trying to walk to me when he did it! We both just looked at each other and asked "were those steps??" It took us a minute to figure it out and realize what had happened! We tried it again and Jack did the same thing! Then, we got out the video camera and filmed him doin it over and over again! It is such a beautiful thing to watch! Then, we got out the digital camera so we'd be able to post it on the blog. By this time he was pretty tired but we got at least 2 good runs and a cute little dance move (which is also a first. He's never stood up like that before). I can't believe our little man is growing up!

Yay! Jack is legally blind!!!

2008-01-24T17:21:00.000-05:00

I know that is a very strange title. You may be thinking, "What kind of mother would be excited about that?". Well, let me tell you......ME! Now that Jack is finally labled he can get vision services to help him utilize what vision he has. We found out today that he has an upper field of vision loss, which we knew, but now it is oficial. We also found out that he is farsighted. They said he is 20/400. It was interesting because the doctor put the lenses that Jack will need to see clearer on me and showed me how much correction he really needs. When I looked through the lenses the whole room became blurry and my eyes had to work really hard to try to get things in focus. My eyes couldn't even work that hard.

They are going to be sending us a pair of glasses with correction and transition lenses. We are going to work slowly with Jack and at first try a few minutes a day and then work up to him wearing them all the time. It will probably take a while but the doctor said that would be fine. He doesn't want to pressure Jack into wearing them all the time too quickly. We did not get to pick the frames but the ones they tried on him were pretty cute. I'll be sure to post a picture when we get them....of course Jack will probably be screaming but at least you'll get to see the glasses!

We also had a feeding evaluation yesterday. Jack refused to eat anything! He'd just shake his head no if I introduced any food to him. Of course this means we got no new information and we have to make another trip up to Syracuse to try again in 3 weeks. We did find out that Jack is now 32 inches long!!! He's so tall!! He's just growing up so fast. It's sometimes hard to believe that the tiny baby I held a little over a year ago is now this rough, tough, little toddler telling me no no no!

Today is our therapy free day so we are going to enjoy it by playing and running errands! We hope all of you have a nice day!!!

ENT Appointment today

2008-01-22T19:37:00.000-05:00

Jack Had his appointment with our ENT yesterday. After waiting and waiting and some more waiting we finally got to see the Dr. He said Jack still has fluid behind his eardrum and he still needs tubes. He said we need to not cancel the surgery this time. I guess it does need to be done.

We got to see lots of friends while we were there! We met up with Lori and Madison at the Dr.s office and after our appointments we went back to the NICU to visit all of our nurse friends. I took Jack's push walker with us and as the nurses started to come out I put him down and he literally ran to them! It was so cute!!! Every time we've gone to visit before Jack has cried until everyone goes back inside. Not this time! Jack was a happy, cute, little man! I love going back and seeing all the people that took such good care of him.

After visiting the NICU we went to the Mall with Lori and Madison. We had lunch and went to the Disney store and The Children's Place (again). Lori and I had a wonderful lunch because both Madison and Jack fell asleep on the way to the mall and slept through most of our meal! When I took Jack out of the van and put him in the stroller he stayed asleep but he kept trying to sit up. By the time we were seated at the restaurant He was slouched over the strooler and completely out! Luckily I had my camera at the time and was able to capture it! I love how he only has one mitten on!

New Backpack

2008-01-20T20:03:00.000-05:00

We've been looking and looking for a little backpack for Jack to carry his pump in. The one that came with the pump would be big for an 8 year old so there was no way it would fit my tiny boy. We bought a bag at pottery barn that was designed to be hung over a chair to collect Christmas cards but he outgrew it in about 3 weeks. We finally found one made by Samsonite and ordered it online. It came on Friday and it is so stinkin cute!!! Yesterday we went to the fabric store to buy the supplies to adapt it with a chest strap. We put it on him this afternoon and he, as we expected, got very upset. We kept it on him for about 15 minutes and after about 5 we got him distracted and then he tolerated it. About halfway through we put the pump in the bag. He was a little off balance at first but he got the hang of it. We had to take it off when he started to crawl away though because the backpack slides over to one side and it pulls him over!

GQ baby

2008-01-20T17:00:00.000-05:00

I don't like to dress jack like a little boy. I like to dress Jack like a little man! On Wednesday, on our way back from the pediatric surgeon in Rochester, I stopped at the outlets. Jack had pretty much outgrown his winter wardrobe already so I was trying to get some good deals on larger clothes. I went in to The Children's Place and they were having a sale where if it had a sale tag on it you took an additional 50% off. Then, I had a 20 % off coupon and I got 10% off for being a card member! In the end I got to take 80% off the sale price!!! I got a huge bag of clothes for $60! Jack is set for the rest of the winter and spring! (provided he doesn't have another huge growth spurt!) I really wish I could have bought a wardrobe for next winter but I learned that lesson when I was pregnant. I bought Jack a summer wardrobe for a typically developing 10 lb baby. He came out at 5 lb and is not a typically developing baby! I wasted about $100! Oh well...live and learn. Anyway, The clothes are still a little big but this sweater fit pretty well. He was soooo cute! He's my little man!

March of Dimes

2008-01-17T19:23:00.000-05:00

My friend Crystal has made this video to raise awareness and funds for the March of Dimes. They help premature infants all over the country. I hope you enjoy the video.

Art!

2008-01-17T18:52:00.000-05:00

We've really been exploring with art recently. Our OT brought fingerpaints but Jack didn't take it very well. We, however, made a beautiful picture. We're going to keep trying fingerpaints at least once a week until he can tolerate the texture.

Yesterday I bought Jack an aquadoodle for the wall (thanks for the suggestion, Amy!). We put it up and Jack LOVED it! He can go right over to it and make marks. When I first introduced him to it he squealed and grabbed the marker. For those of you who don't know what an aquadoodle is, it is a big piece of paper that turns blue when it is marked with water and then it is back to normal when it dries. It is going to be a very fun toy!

Tagged!

2008-01-07T21:02:00.001-05:00

I've been tagged (Thanks Ellen!!!!) so here are 5 things you don't know about me!

1) My husband and I have known each other since kindergarten and it wasn't until I moved away and had been gone for 3 years that we started to date long distance (over 1,000 miles!) We dated long distance for 3 years before we got married!

2) I Hate sand! Just thinking about it makes me cringe.

3) I've always wanted to have my own bakery. I love to create my own recipes and I have chocolate chip cookies that are famous in three cities!

4) I attend a book club but haven't read a book since Jack was born.

5) I was once in a beauty pageant but lost....(I was 5)

I'm now going to tag MK, Candi, and Jacob

Also, I cant help but post this picture of Jack I took today. He's so cute and he loves having his picture taken!

Ok, so I posted two. How could I not? He's just so darn cute!!!

MARKERS!!!!!

2008-01-07T12:59:00.000-05:00

On New Years Eve we went out to dinner with some friends and as usual the hostess brought a children's menu and crayons. We try every time to see if he'll color but usually the crayons go right in his mouth. This time, however, he watched me color and he took the crayon and made the most beautiful markings! We were so proud of him! This weekend I went out and bought the Crayola baby crayons and markers. They are shaped like eggs so it is easier for little hands. The markers don't have lids and they are supposed to be great for babies. We tried the crayons first and he did a few passes on the paper before throwing them on the floor (breaking one in the process). We gave him the markers next but they were a disaster! Jack got the marker part in his mouth and within a second his whole mouth was green! I think we'll have to wait a while before we try again. However, our OT is bringing fingerpaints on Thursday! We'll see how that goes!

Mommy's Little Helper!

2008-01-03T13:35:00.000-05:00

Jack was quite the helper today. He was off the pump, and therefore crawling all over the house, while I was trying to get the dishes done. As soon as I opened the dishwasher he crawled right over to help. I took all the dangerous silverware out immediately and left him with some rubber spatulas, wooden spoons, and big serving spoons to play with. He stood there for quite a while as I put away the clean dishes. He kept putting the untensils in his mouth and then tried to put them back in the basket. It was really cute!

New Car!!

2007-12-28T22:13:00.000-05:00

We had a great day yesterday! Philip and I drove down to Elmira, Ny to look at new cars. We have been trying to get a new vehicle for almost a year now but haven't been able to because we still owed money on our Saturn. Recently, however we have been able to pay off the Saturn and we had a down payment for a new car. Anyway, we were able to find the perfect vehicle....a minivan! I've sworn my whole life that I'd never drive a minivan but for the past year it is all I've wanted. We were able to get a 2008 Toyota Sienna. THey were having a "toyota clearance" and we were able to get a really good deal on a van with power sliding doors and built in xm satellite radio! It had all the features we wanted! I had so much fun driving it home! We are so thankful to be able to have a safe vehicle to drive. We no longer have to worry about breaking down on the way to one of our appointments. Also, now Philip has the Saturn to get back and forth to work and he no longer has to walk a mile down the road in the snow to catch the bus. We are so blessed to be able to have our transportation needs figured out!

Welcome!

2007-12-28T22:05:00.000-05:00

Welcome to Jack's new website! We hope that you will enjoy the new site and that you find it easy to use! Please feel free to leave us comments on the posts to let us know your reactions and to share your support if you wish. Check back often!