Fun at the Zoo

1st Ballet Class

chipotle chocolate

I'm a little bummed after Izzy's orthopedic apt. Her curves are still getting worse! The changes are small but I sooo wanted to hear better news. Both her curves are around 40 degrees now. The plan of care has not changed. She is to be in her brace 20-21 hours a day and she back in 6 months for xrays and follow up. The Dr said something about it being good that the changes are so small right now because the slower her curves progress the fewer surgeries she will need to have on her back in the long run. I did not ask questions after the statement I was too busy processing what he had said: Her curves are worse and fewer surgeries..Ahh!

I do not want her to need any back surgeries! I don't want her to have growing rods! I don't want her to have her spine fused when she is older! I do not want her to have scoliosis! Seriously I need to vent right now!

There is a chocolate sold at the store by our house. It is a dark chipotle chocolate. When you first put it in your mouth it is sweet velvety and smooth. Then as your mouth warms from the chilies you can taste the chocolate as it melts down into a smooth exhilarating sugar. When you swallow your mouth is left with a sweet fiery burn.

Izzy is so sweet, loving strong and forgiving. She has such a happy personality and a VERY strong will. Her medical struggles have shaped her personality and tolerance and will continue to shape aspects of her life. She is so strong and brave. She takes on all the challenges she is given so gracefully. I not only hope but also believe that as she grows she will continue to shine though all the struggles she may face. She will continue to reflect her warmth on everyone she touches as she grows. She brings so much joy happiness and faith into our lives! At the same time we feel the burn of it all. I am so sad that my daughter has to go though all of this! I can't express my thankfulness that she is alive today. I am grateful that she is doing so well, that she is stable and able to enjoy swimming dancing and sing silly songs about poop! I just can believe the amount of challenges she faces sometimes! I try not to pause to long on this issue normally but sometimes I want to just scream! We take on one challenge at a time; one day at a time and sometimes one second at a time.

We love those little chocolates and the burn is so minor in compare; as is the sweetness!

Izzy entertaining herself at the apt!

"art dance"

So Izzy is in her brace sleeping in our fridge..urrr.. I mean room since it is the coldest room in the house. It broke 100 here in seattle! Ahh spider i'm outta here!!!!!

Doppler Day 2

Izabell did great again though she was not as still and it was more of a challenge today for a three year old sitting though Doppler imaging he did great! She does not like them imaging the back of her neck so the last bit was hard. She had a harder time sitting still near the end of the apt but they got the images and we see Dr L next week for the results and follow up. Izzy and Steven went to the baseball game last night and had a lot of fun. They shared pizza nachos peanuts cotton candy and who knows what else! When they got home Izzy's stomach had something to say about all that junk food (thank you Steven for cleaning up) but she still had fun and wants to go again:) I went to the movies last night while they were out and we (Mimi Shawna and Ashley) saw The Ugly Truth. the movie is a little crass but very very funny!

My adorable family at the game!!

Today Izzy has her orthopedic apt I'll update when we get home... think good thoughts...

Doppler day 1

Izabell did a great job at her Doppler apt today!! She sat very still and watch Coraline while the Dr went about business. She was in a great mood though out the apt and we are very proud of her. She loved having Steven there with us today as did I! Tomorrow Izzy and I head back to Swedish for round two. They did her neck today and tomorrow's Doppler is focused on the inter cranial arteries. These areas have had changes in the past so hopefully tomorrow will bring only good news... no changes . Izzy was happy to see the Drs and sat so still today! She was amazing! On our way out today she told the Drs

"Bye!! I'll see you tomorrow and I'll sit really really still for you too. ok?"

She is amazing! I did take some photos of her doing Doppler studies on Josh after her apt! I will try to post them sometime tomorrow!

It is very warm here in Shoreline this week! I love the sun and warmth but poor Izabell is struggling a bit with it. She has a rash all over her stomach and back where her brace covers. I changed her brace shirt twice today to try to help keep the sweat of her skin and we also but the shirts in the fridge before putting them on her so help keep her cool. We have her sleeping in our room since it has AC and less sun exposure and is very cool. The rest of our house is cool enough though we have some large windows that the sun just burst in in the afternoon. So as much as i want to be outside enjoying the sun I am choosing to keep Izabell indoors and as cool as possible. We are of course pushing fluids now!

After the Drs apt tomorrow Steven and Izzy are going to the baseball game! It starts at 7 so we are hoping it will be cooling by that time. Steven only got two tickets( was supposed t get 4) so I am going to have a few hours to myself in the evening and I plan on taking advantage of them:) I also have plan to give Izzy a bath and keep her brae free for the game so that she will be more comfortable i the heat. Wet hear and no brace should definitely help. I hope that everyone is enjoying the weather keeping cool hydrated and having fun!

Summer Fun

Playing with CJ at the park!Staying cool in the back yard!

Talking to Bubbie and Zayde on speaker phone
and reading a card
while sitting in a tiny box!

Hamming it up for the camera!

Relaxing in the Pool!

Why did I take a picture of a wall of lockers?....

I jinxed myself posting about her sleeping in her own bed for the entire night! Oh well she gets pretty close just can't fall back asleep when she wakes during the night and wonders to my bed. Soon...

We have had a fun week! Sunday we had some friends and their children over to play in our little plastic pool and sprinkler and grilled some sausages for dinner. Izzy was happy to have her friends over and wants to do it again. I loved having everyone over too!

Izzy is doing good in her swim class and i have been taking her to the family swims after her class. She loves being under the water and is getting stronger in the water. She will now jump into the pool from the side while I catch her and loves going down the slide into the pool again while I catch her. She is happy and very brave in the water and it is fun to watch her! Izabell was very good in ballet today and did get a stamp! She came out of class and told me that she was very good and did not get a time out! I was relived and proud at the same time! She has been great this week and I think that she was just tired last week but who knows I probably just jinxed myself right! lol! I love her no matter what!!

Wednesday Izzy played with her friend CJ. She met him in swim class. He is a really sweet and thoughtful little boy. It was very cute and fun to watch them play together. They are not in the same class this week but do talk to each other across the pool!

Saturday I am watching Missy's children so Izzy will have fun playing with DJ an Samantha while their parents enjoy some time together. My cousin and her family are coming over for dinner this weekend and we are looking forward to meeting them. I am sure Izzy is going to love playing with their 4 year old daughter! Steven will be cooking :)

I am not going to enroll Izzy in swimming next week since she has so many apts. I am planning on taking her to a couple family swims though! Monday and Tuesday Izabell has the Doppler imaging apts. She has these every 3-4 months to check for changes. We of course hope that she will not have any changes and we only get good news. Her follow up for the Doppler will be the week after. Steven will get to come to Mondays apt with us! This will be the first time he has come. I will be grateful for the help since these apts run anywhere from 2 to 4 hours. Izzy is very good at the apts. Sitting still for that long while someone is doing imaging on your head and neck is pretty hard for an adult not to mention a three year old. I hope to rent the movie Coraline so she will have it to watch at the apt. Her Drs do a good job helping her though and give her breaks and listen when she complains that they are pushing too hard etc. I also ordered her a couple Furyville toy sets and a Calico critter bunk bed to give her after her apts for being so brave. Amazon works great I can get Izzy some brave gifts with out her seeing :) and since they are local they come quickly! I am nervouse for the orthopedic apt since I have noticed changes in Izzy's back I am hopeful that we will get only good news but worried or rather distrustful of Izabell's body. Her spine looks straighter to me but her ribs and shoulders seem more uneven, rotated, so I am not sure what this means but I guess we will find out Wednesday. I will keep you all posted as the week progresses.

I'll try to post a couple pictures tomorrow as well:)

She is too funny!!

Izabell's eye apt went well last week. Izabell did a great job at the apt and followed the assistants directions pretty well. She does not like the eye patch but she did tolerate it better when I got down on my knees next to her and covered my eye and did it wit her! She saw the assistant on Friday and in 6 week sees Dr C. Her numbers have fluctuated but stayed in the same area so from my understanding we will be discussing surgery at the next apt but maybe she will surprise us all! She is good at that right:)

Friday night Steven and I went to a movie while Annemarie babysat.We had planed to see a sneak preview but when we got to the theater in Bellevue all the 7 ish and 8ish shows where sold out at the theater so we drove back across the bridge and went to the new Cinnebarre Theater which is different. It is a 21 and over theater bar restaurant type place not bad just different but not sold out either:) We saw The Proposal which was cute. When we came out of the Theater we found my car battery was yet again dead! Steven left the lights on and my battery is weak! After asking three people who pretended they did not hear/see us and drove off without helping ( it was late and we where across the street but I was still a little shocked!) and we found a nice car load of people who did offer us a jump start! Ahh the trouble we find right? We had a good night and Izzy had fun with Annemarie. When we returned home we found Izzy asleep with about 20 books in her bed with her and her glasses still on! I think Annemarie read them all to her at bedtime! I should have taken a photo!

Izzy has slept in her own bed though the night for the last two nights! Yeah Izzy! Normally she wonders into our room between 3 and 5 am and sleeps till 7am before waking up for the day. The last couple nights she has made the entire night in her room! The first night I woke felt a little panic and ran to her room to find her sleeping soundly. This morning I woke up to her big smile asking me if I was so proud of her for sleeping in her bed all night! I of course said yes and then then my quick little girl asked is she gets a special treat for breakfast since she is a big girl and slept in her bed... I told her to go talk to her daddy about it and listened to the start of their debate before I fell back to sleep for an hour! Steven has Mondays off and is always up at 7 (probably up by 6) so I got to enjoy an extra hour of sleep today! It is nice to have our bed to ourselves again. It is also nice not to be kicked rolled and flopped on by Izzy and her hard back brace! The best part of this new trend is Izzy's proud smile when she waltzes into our room in the morning! She is so proud and excited!!

Steven took Izzy to swim class because I had a Dr apt again this morning and then after the apt went to my friend Linda's to help her bring stuff down form her attic. My apt ran later then I had anticipated so we ended up in the attic at 1pm and it was hot! Poor Linda was up there sorting boxes while I got to go up and down the ladder carrying the ones she wanted down. It was HOT up in the attic so I had the easy job since I did not stay in the oven(... attic) too long.
When I got home the house was so silent thought that Steven and Izzy went for a walk till I walked into our bedroom and found them both asleep in our bed! Izzy enjoyed the time with Steven today and asked if he would take her to swimming tomorrow. She is a daddy's girl :)


Next week Izzy has two Doppler apts and the follow up apt with her Orthopedic Dr. I am hoping for all good news from these apts!

spit fire

Izabell ate like a pro the last two weeks so it only fits that she is not interested in food this week right. She is eating some just not a lot. i don't think she is sick or anything just hot tired and 3! Though I do think the lower food intake makes for a more challenging week. Ahh!

Izzy got a card from Bubbie and Zayde (Ina and David) and has carried it around with her all day. I have read and reread it many times. It came with us to the gym, swimming and ballet! They also gave her money to buy a toy with. She likes Calico critters and so I took her to get one but the store did not have the one she wanted (play set with the beds and animals) so she told me she wanted to wait and find one another time! We looked at a coupe stores but they did not sell them so I'll have to take her later. The store had the set on display to play with just not for sale. She always plays with that display so that's why I took her there. She likes to put the animals to bed and ect...role playing. She is getting so big! She even turned down a doodle pad like her friends Gabby's which I know she really wants to wait to get the other play set. I tried to tell her we could get it online but she wants to spend her money on it! She is too funny! Has anyone heard or seen furryvillle toys.. they seem to be like the calico sets but half the price and softer. It seems like they are both sold online but only in small toy stores, not toys r us types, but today I ran out of time and then after ballet was not about to take her to buy a toy. Still she walked around with her money in her dress pocket (too cute) and chose to save her money until she finds the toy she wants! When did she get this BIG!!!!!

She was naughty at ballet and the teacher had to come and talk with me after class. Izzy was not listening and also started pushing other girls! When told to apologize e she put her arms on her hips, stomped her foot and told her teacher no!!! *gasp* Ahhhhhh!!(Sshhh! I may have done things like this when I was her age. Mom and Ina you guys can stop laughing now I know your enjoying this a little bit!!!!!!) I knew something was up when her teacher came out of the room with her eyes wide and said something about a spit fire. Izabell did not get a stamp at class today and lost her movie time, two more minutes and after a lot more attitude got to spend some time cleaning her room and thinking about things. We have had a lot of talks about listening, following directions and using her words hopefully tomorrow will prove to be a better day. She did not like sitting in her room after ballet and declared that she is going to follow the rules and not push next week. Let us hope...


Tomorrow after swim class Izabell has a apt with her eye Dr's assistant. I know that we are going to be discussing her surgery soon but think we may have 6 more weeks before we have to go there. I think next week is Dr free then the following week she has Doppler apts on Monday and Tuesday and othro on Friday. I'll keep you posted of course.

Ahh! My fearless child!

Izzy swam off the platform at swim class today and scared me big time! She is fearless and the teachers did not see her until I asked them to grab her because she was not able to get her head out of the water. I am not a fan of watching her struggle like that!!!! I was taking a video of her swimming around on the platform when it happened. When she started struggling I turned the video off and stood up to get the teachers to help her. She was bobbing trying to get her head up for a few seconds and I was getting ready to jump in the water myself.In the video you can see how she swims around the platform and the beginning of her struggle. The teacher grabbed her about 5 seconds after I turned the video off and Izzy was of course fine. Though when her teacher pulled her out of the water she did look a little unsure of what was happening and then relived. She did however listen to her teachers and stay on the platform for the rest of class.






Ahh! This girl is going to make me loss my hair one way or the other! She of course was not scared 5 seconds later and continued on with her swim class!

5k pictures:)

We had a lot of fun at the 5k even though we went without sleep:) Izzy did a great job running and ran quite a bit of it on her own! go Izzy go!! mimi and Eric where with us and a great support and also did a great job running in the race! The town is really fun and very friendly! Off to swim class or else i would take a bit more time to type... enjoy the photos:)

Izzy and I are off to Mimi's house. Then early morning we are heading out to Royal City for the Heart walk/run. I made shirts for Mimi Eric Izzy and I and think they turned out pretty good for the day before action:) I'll take lots of photos and share them when we get home tomorrow night. Sunday we are heading to Trevor's (Izzy's CICU roomie) birthday party! He is turning 4!! Wow!! I hope everyone enjoys the weekend.

She is a fish!

Izabell did great at swim class today. She floated on her back for 3 seconds by herself! I think she may ge to move into preschool level 2 class in a week or two! The teachers test for levels on Thursdays and tell us Fridays which class to enroll in for the next week. She loves the water! She loves having her whole body under water! When it was not her turn to practice with a teacher she would dunk herself completely under the water! The last couple of days I have taken Izzy to free swim and played in the pool with her. Today she asked to go down he slide into the pool! I asked the lifeguard if it was ok and they gave her a life jacket and permission! Izzy loved it and would slide down to me where I would catch her under the water! She is now very tired but has had a lot of fun in the water this week!

Photos from the 4th!

5K RUN for CHD research!

Up for a trip to the east side??? Want to participate in the Royal City community days fun run for charity? This year it's in honor of Maddie (15 months w/ HRHS), and all proceeds will be donated to the Children's Heart Research Guild for CHD research!

Here's the details:
When: this Saturday, July 11th
Where: Royal City, WA (a little farming town about 3 hours east of Seattle)
Time: 7:00 am (if registering the day of the event, please come a little early)
Cost: $10 pre-registered/$15 day of event
5K RUN ROYAL FOR CHARITY:
Moderate difficulty through farm land and rural area starting at Royal City Lions Park at 7am for adult 5k run/walk and 8am for youth fun run. Runners and walkers welcome on this relatively flat course partially next to farming ground. Hear the birds chirping!!
Link for registration form & Summerfest Community Days: http://www.rcsummerfest.org/images/funrun2009.pdf
http://www.rcsummerfest.org/

You do not have to run you can also walk the route an enjoy some social time with friends!
If you'd rather just donate to the cause and skip out on the race, that's awesome too. You can get your registration forms here .

We had a great time at the cabin this weekend. Izzy loved the little plastic pool in the back yard and would not even try to stick her toe in the river. She said not when I asked her to try with me and told me there are frogs in there! It was way to cold to play in anyways! She did get to fish with her new little fishing rod but did not catch a fish and of course lost interest fairly quick. She loved the dog that was there and spent a lot of time with her. She even shared her meals with the dog when she thought we where not looking. (really cute) We also took her to the 4th of July parade which was her first time at a parade and she loved it! When she realized that some of the floats threw candy at the crowd she was beyond excited! She had a lot of fun and a large amount of candy! I have pictures of course and will try to post them tomorrow while Izzy naps.

Izzy started her second week of swim class and Steven was able to come watch her today which was wonderful! She is so happy and comfortable in the water. The classes change weekly as do the teachers so that the kids get different experiences in the water. She likes her new teachers. She is still the smallest and possibly the youngest in the class but it doesn't 't affect her swimming one bit:)

Last week she pulled herself out of the pool using the edge. The teacher was baffled and told me that the older kids struggle with that and Izzy just pulled herself with her arms and waved at me and her teacher! Everyone was so shocked that she could pull herself out to they had a delayed action to her dumping the water toys into the pool! She got a lot of them in there before the teacher got her back into the pool. She is my little trouble maker!

It has been nice to have a couple weeks without Dr apts! This month Izabell will see her orthopedic Dr and her Eye Dr. I still have to schedule the Doppler studies and follow ups for either late this month or early August.

Fun Conversations and Photos!

While walking into the gym this morning holding Izzy's hand she started explaining to me why she was holding on so firmly. She was protecting me from all the cars because they are dangerous and she doesn't want me to get smooshed. (dramatically claps hands together on the last word!) She is so funny and very dramatic at times!! She is very observant and has a great imagination as well :) I love having conversations with her which is good since she is rarely quite!

She did great at swim class again today and also enjoyed her first ballet class this evening. I could not take pictures of her in the ballet class because parents are not invited into the room as we are distracting. There are no windows to watch so as I sat in the hall for 30mins I made a mental note to get a few good books lined up for Thursdays!! I did take a few pictures before class and at swimming:) I am also sharing a couple pics from earlier this week. Enjoy!

Izzy on the bike trailer on our way to swim class yesterday!

Izzy pedaling her tricycle on her own!

Float Izzy Float!

You can see the difference in symmetry of Izabell's back/shoulders in this picture.

My beautiful ballerina and her beloved Count:)

We are going to spend the weekend at a cabin with Steven's friend Mike. Izzy is very excited! Mike and Steven have agreed to take her fishing which she has wanted to do for some time now. She saw kids fishing on the news and started jumping up and down shouting "I want to do that with my daddy!"

I hope everyone has a wonderful and safe 4th of July!

I biked Izzy to her swim class today and we both enjoyed the ride. The pool is close to our house so it is under 4 miles round trip so it was a short ride. I need to get my muscles used to a bike (and my tush!) Izzy did great at swim class again today. She did some how smash her mouth on the pool and had to leave class about 5 mins early because she was bleeding. (no bleeding allowed in the pool) She was fine (no tears and not in pain) not sure how she did it but her front tooth upper lip and lower lip where all bleeding. She is going to make her dentist work hard at this rate!! She proudly stated on the bike ride home that she had a fat lip just like daddy now! She is a riot! Steven ate puck at his hockey game on Sunday! He is fine, has all his teeth still and they are not even loose! Pucks are hard and come fast so this is all good news!!!He does have a sore swollen lip which is starting to look better but he is pretty sore. Tomorrow we are driving to the pool because I have a work out class in the morning right before her swim class so my tailbone gets a break:) Izzy has ballet in the evening and she has reminded me all week that my car was dead and she missed her first day last Thursday! She is too smart! We are not missing it again if I have to bike her there I will, though I am not sure I would make it back up the hill pulling Izzy in the trailer to get home! My car battery is charged and I will be checking though the day to make sure it stays that way!!