Changes..

Izabell had her apt with Dr L yesterday for the Doppler imaging follow up. The apt went well but the images did show some changes. Her velocities have increased which can be a sign of vessel narrowing. Also her intermittent subclavian steal has changed to a complete steal. Grrr! She has not had any changes for the last few months so I was not expecting any yesterday. If you remember last winter Izabell had some changes and increased velocities and they brought on a lot of worries and consultations with neurosurgeons. After all the worries and apt her CT scan proved no major changes had occurred and suggested that the increases shown last year where not from narrowing. I am hoping that the increased velocities now are also not going to be a problem. Her next Doppler is in three months so the Dr's are not worried yet which is good news. We are not worried yet either since last year we had a false alarm in this area. I am still saddened that there are changes again and hope that they do not continue. After last years CT scan her Dr decided that she would need a follow up in a year to follow her venous malformation because it had doubled in size. So we already know that she will have a CT scan this winter so if there is any new narrowing of her vessels it will show in the scan then. I am hoping that her the next Doppler study will show no new changes !!! I will of course keep everyone updated.

Izabell also had picture day at the J preschool yesterday! She looked so cute in her dress and striped tights! She was happy and smiled big for the pictures! I can't wait to see and share them with everyone!!

Doppler went well!

Last week Izabell had her Doppler apts. She was wonderful though both apts!She laid still on the bed while they checked and measured and then was very happy when they let her do it to them when they where finished. The apts this week where both under two hours! She was so calm and still they where done and we where on our way so quickly! I was stunned when I paid for parking on the way out and it was under $10!! Izzy your a rock star and we are so proud of you!!! It was nice to have the apts go so smoothly! We have noticed that the weeks that Izzy has a lot of apts she acts out and tries to control everything around her! I get it, really I do. She is great at her Dr apts . She loves all her Drs and does not seem worried/stressed by them. She does do as she is asked (for the most part) and charms everyone around her. It takes a toll on her though and we see it after the apts. She wants to control something and having so many medical apts that you can not control is hard on anyone especially a three year old. She becomes sassier than normal and is quite feisty.

I'm not wishing to complain. I am so grateful that Izabell has such good medical care, grateful that she has preventive care and feel like she is in wonderful hands. Her Drs are very good to her. They take time to talk to her, explain what they are going to do and they are of course charmed by her.She is clam around them, loves hospital food knows how to charm the nurses into more stickers and recognizes landmarks around the hospital! She loves to play Dr and definitely grasps that is is important to listen to her Drs suggestions. She might listen to them better then she does to us! lol! I am just tiring to explain that it does affect Izabell even though this is the only way of life she knows. She has taken medicine and has been surrounded by Drs and medical staff since she was just weeks old.

She has a dentist apt this week and a follow up with neurology to go over the Doppler results coming up as well. So I am getting ready for some sass from Izzy but hopefully it won't last too long:) We are tiring to teach her words for those feelings so that she feels like she can express the way she is feeling without getting stuck in time out! She also has swim classes and ballet so fun is of course in the mix:) Hopefully we get all good news and Izabell doesn't feel too stressed form the apts and keeps her sweet personality throughout!

I am still waiting to hear back form her Orthopedic Dr here in Seattle. I'll keep everyone posted. Hopefully will will get her casted and into new braces soon!

Magic !!

We came home Sunday but it has taken me a while to post an update. We had lots of laundry and have just been tired from all the fun and the long flights! We did have an amazing time in Philly!

As you already know from my last post the Dr's apt was definitely worth the trip!! We have more hope now that Izabell may be ale to avoid invasive back surgeries though now we are waiting to hear from the Dr here to see how and when Izzy will get the new braces. but I'll type more about that later now for the fun stuff!!

While in Philly we spent time with Stevens parents who flew in to meet us and helped us and offered so much support while there!! We also met up with Steven cousins who live there! The have two children Mathew who is 4 and Layla who is almost 2! Izzy loved spending time with everyone and the conversations between Izzy and Matthew where adorable! We went to the Please Touch Museum on Friday which was a lot of fun!! Izzy and Mathew play great together and I have lots of pictures!!

Saturday, Halloween we went to Sesame Street Place!!!!! The day was magical to say the least!! Izabell was decked out in her Count costume and was so excited to meet the Count!! When we arrived we signed her up for the costume contest and then took her to see the Count's live show! While waiting in line for the show Izzy saw The Count!! She ran over and got pictures taken with him too! Izzy and Mathew both watched in the front row with wide eyes and their moths open! lol!! It was so fun to see them enjoy the day!! After the show we went on some fun rides then participated in the costume contest where Izzy took 3rd place (out of 90 ) girls!!!!!! She was a ham and had fun showing off her costume! We went to the climbing nets where Izzy climbed though tunnels and high into the nets with Steven and I. She is so brave! lol! She is fearless sometimes! After lunch Izzy got her picture taken with Elmo and we shopped for some treats then we took Izzy to the VIP area to wait for the parade to start. Izzy got to walk in the parade because she placed in the costume contest!! While waiting for the parade all the Sesame characters came and said hello to the winners!!! So we got to meet them all and take pictures with them!! Izzy was so happy to meet all her Sesame Street friends!! She of course was overjoyed to hang out with the count some more!!


When the parade was about to start they decided to have Izzy walk in front of the Count's Float!!! She was thrilled and started out the parade dancing and waving like a pro!! A few minutes into the parade the Count got off his float and came over to Izzy and danced with her and gave her some hugs! She was so happy!! Then thought the remainder of the parade the Count danced held hands and walked with Izabell! Steven and I were and are still amazed at how the day played out! There was nothing we could have done to make the day more magical for Izabell!!

Most of you know how much time Izzy spends with her count doll. She takes him to almost all of her Drs apts with her! He has stains on his chest from getting echos and EKGs. He gets his blood pressure taken and bandaged up after shots. She takes him on the bus to school with her to help her feel at ease with the constantly new bus divers on route. Every night the count is tucked in bed with her and for the last two years she has dressed as him and toted the doll trick or treating with her! The count doll has been part of her support and coping system though many apts. So getting to meet the count and get some special attention from him was such a fun experience!! Steven and I could not stop smiling the entire day and we are still amazed and thankful for such a lovely day!! I hope you enjoy the pictures and videos I will share more when Steven's family send tiers our way:)

We played at Sesame Street Place from the time it opened until closing and then headed off to for some fun trick or treating with our cousins in Philly!! Izzy loved trick or treating at row houses and she had a lot of fun with her cousins!!

Shriners Update :)

The apt went well yesterday!! Dr Betz, Janet and the entire team where wonderful! We did gain more information and a new care plan for Izabell's scoliosis! Which is of course wonderful news!!! Dr Betz and Dr Sung (Izabell's Dr in Seattle) are on the same research project and talk often which will hopefully work in our advantage.

The apt started with a series of X-rays of Izabell's spine and neck and then we met with Dr Betz and his team. They let Izabell choose a doll to take X-rays with which she loved and was told to keep after they where done. She is now toting that doll around everywhere! Dr Betz measured Izabell's curves at a smaller angle then Dr Sung (there is always a 5 Degree measurement error so not a big difference) and the changes in Izabell curves are minimal over the last year which is wonderful news. The bad news is that in brace X-rays show that the brace in not offering any correction to her curves. The last year in the brace has most likely slowed down the progression of her curves which is good, but it is not offering her any correction to them. Dr Betz does not think Izabell has neuromuscular scoliosis and has classified her scoliosis as syndromatic scoliosis. (which means they really don't know what is causing it.)

Dr Betz wants to be as aggressive as possible with Izabell's treatment plan because the proposed surgeries would be high risk for Izabell. So the new plan is to switch Izabell to two different braces. The Milwaukee brace for day use and the Providence brace for night use. He wants her in brace X-rays to show a 20% reduction in her curves and if the braces do not achieve this he thinks we should have Izabell casted. The X-rays show very flexible curves and he hopes that with very aggressive bracing and or casting Izabell's curves may be corrected and that surgery may be avoided. This of course is WONDERFUL news!!!!!!!!!! Dr Betz is going to call Dr Sung in Seattle to discuss Izzy's care. We have the prescriptions for the new braces and hope to have her casted for them when we get home and switch over to them asap.


We are very hopeful that with the new care plan Izabell will be able to avoid invasive surgeries!! Now lets hope that the Drs in Seattle will agree with Dr Betz and our insurance will cover both braces.

Ballet Fairy

Today was a very busy day! Izzy had preschool ( and Pt there) and then we hit the library to return books then went swim class and then home to finish packing and cleaning before heading off to ballet class! I made her a costume from what we had around the house since the class was asked to dress up for Halloween show week. She is going to be the Count Von Count for Halloween of course but that costume is packed (and not so easy to dance in) since we leave early in the morning so today she was a beautiful fairy:) She loved getting all dressed up:) It was fun to see her dance!! !Nurse Amy surprised Izzy and came to watch her dance today:) Izzy was so excited to see her and was beaming though the whole class! Her normal class is Saturday but since we will be gone we went today to make up and still get to enjoy show week:) She did great even though it was not her regular teacher and she was getting tired!!Thank you Amy you made her day!! :) After class Amy came over and visited and then I made dinner and fished packing and sorted though medical reports to make sure I had all the ones relevant to this upcoming apt. We have a LOT of medical reports!! So we are now ready to head out tomorrow and Izzy is very excited about the trip to "Philly delfia" I love how she pronounces it! She is ready to meet the new Dr, ( showed he some pics of him I found online to help prepare her for a new face) and she is very excited to see Bubbie and Zayde who are already there and will pick us up at the airport tomorrow! She is looking forward to spending Halloween at the Sesame Street Theme park and getting to see the Count!! She also checked to make sure I packer her Count costume and makeup! lol

Fall Fun!!

On Friday Izzy had her friend Riplee over for a play date. They had a lot of fun together and she is looking forward to visiting with her again:) Then Izzy dressed up in her Halloween costume ad went to the fall festival at her school! She had fun and looked really cute! She was happy to see her friends there as well. She was a bit fussy throughout the day after overhearing that her eye surgery has been scheduled for Dec 4th. She was very angry about that and had a bit of attitude the rest of the day but she did have fun too!

Today Guy Amanda Morgan and Zoe came up and carved pumpkins with us! We had a wonderful time and it was great to spend the day with family! Izzy loved playing with the pumpkin insides! She was covered in the seeds and slime! lol!! Izzy loved having Zoe and Morgan over and was very sad when they went home tonight! She wants to go to their house tomorrow! I promised that we would go over the week after when we get back from Philly. She said we should miss school and go tomorrow! It is so fun to see her with Zoe and Morgan! They are all great together and all three girls are always laughing! I hope you enjoy the photos:)

Wonderful Day!!

After school today Izabell had her 6mth apt with her endocrinologist. She has been going every 6mths because her weight and height had fallen off her curve. Izabell dropped below the 3rd percent and stayed there for almost a year! She was 3, 34 inches tall I think and 26lbs last time we went to the clinic!Today Izabell weighed in at a whopping 31lbs and was 37 inches tall!!!!!!!! (We baked bread, cookies and had pizza the week before in hopes of making it to 30lbs!!) Yahoo!!!!! Grow Izzy Grow!! She is now just below the 25th percent on the growth charts!!! Her Dr was very happy with the gains in height and weight. She decided that Izabell would not need the blood work that they had planned for the apt so no blood draws today either!! Awesome! Izabell did see Hector (best lab tech ever!!) on the way out by the lab and ran and gave him some big hugs and he of course had a stuffed animal ready for her, lol! Izabell has moved to annual endocrine apts now since she has had good catch up growth!! Yahoo!!

After her endocrine apt Izabell had an apt with Diane in the orthopedics dept. Izabell had a bruise and callous on her hip from her brace so I wanted to have them check the fit. Her hips have gotten a little wider (she can almost keep her pants up wit out her brace on) and so she needed some adjusting and and thinning out of the pads inside her brace. Hopefully now she will be more comfortable in her brace. (Not that she mentioned it hurting or being uncomfortable I just noticed some bruising.)

Next week we head to Philly for Izabell's apt at the Shiners Hospital. We are busy getting things ready for the trip. I also took some time today to make many needed phone calls and schedule Izabell upcoming apts. She now has apts booked though June and those are just the ones we know about at this time. It feels and looks like a lot of Dr apts ( and it is really) but I know that in reality she has way less apt then she did two years ago. She is doing great and is a lot of fun! We still do not have her eye surgery scheduled the Dr is due back from vacation later this week so we should be hearing from him soon.