Congrats Steven!!

Steven crossed the finish line at 11:58!!! He completed his first marathon!!! 26 miles!!! His time was 5:06!!!!!!! Yea!!!!!!!! Way to go Steven!!! Izzy and I are so proud of you!!!!

overdue update

Wow! Sorry! We had a wonderful Thanksgiving Steven's family came and stayed with us and the company was wonderful as was the food!!! Steven's surprise Hockey birthday party was a lot of fun! He was happy and everyone had a great time!!

Izzy had fun too!!!

Daniel (Uncle Goon) and Betsy are engaged!!! We are all very happy and excited about this news!!! They are such a wonderful couple and are so much fun to be around!! Congrats!!!!!

Tomorrow Steven and his brothers Daniel and Neil will run in the Vegas Rock and Roll marathon!! Crazy huh!! I am so proud of them all. They have all been working very hard!! Betsy will be there but can't run due to an injury but she will be able to take some pictures for us to share!! Good luck guys!!! (Steven Izzy and I will be thinking about you and wishing we where there to support you!! We are so proud of you!!!)

I want to wish a belated happy birthday to Uncle Goon and also to my niece Morgan!! Wow I am so behind lately!!

I do have news from the orthopedic Dr. He has given Izzy a prescription for one of the braces (Milwaukee) the Dr in Philly recommenced but he also politely disagrees with the second brace recommendation (the providence) and will talk with us about it at her next apt which is in Jan. We will wait hear and consider his reasons for this and then make decisions from there. I was able to get Izabell an apt for the casting of the Milwaukee brace for Thursday! They said it will take about 2two weeks to make it after she is casted for it. This is good news! I am not overly excited to have Izabell go into this brace or go through the discomfort that is expected as she gets used to the new brace and the curve correction they are hoping to achieve. We are attempting to avoid many painful high risk surgeries in her future and I may need you all to remind me of this fact so I can stay strong and patient for her while she adjusts and gets used to the new brace. I have a feeling this brace is also going to be very noticeable since it goes above over her shoulders and possible around her neck. I'll have a better idea on what the brace will look like after the casting but I did add some photos I found of the brace. It has improved over the years but it is not as discrete as the current brace. She needs it and the sooner the better. I had to be one squeaky wheel!! It is hard to push for something when you know that what your pushing for will be hard on your child but not pushing and ignoring the problem would cause more pain in the end.

picture of Milwaukee braces

Izabell also has a cardiology apt on Monday! She goes every six months and we also call her pacemaker in every month but she has not had an echo in a year!!!!! This is the first time she has gone this long in between echos! I don't think I am nervous about the apt or the echo. Knowing that she has an echo Monday is a relief. I have not been worried about her hearts health but knowing that on Monday we will have confirmation on how her heart (valves and narrow arch) is doing will be very comforting. She has grown so much in the last six months and it will be good to see how her heart has changed and handled the growth as well!! I am expecting that her medicine dose will be increased due her growth and hoping that we have only good news to share after Mondays apt!!

Izzy at the Scratch Patch Rock collecting rocks:)

I am sure I have much more to tell everyone but it is late so it will have to wait for another day!! I will update again to let you know how Steven and his brothers do though the marathon and also to update on the card report Monday!!!!

I love you Steven!!!

Happy 40th Birthday Steven!!!

Your a wonderful husband and father and...

your one hot old man!!!

1st haircut!!

Pic of her hair last month pulled back I should have taken a before pic today but o well :) it was a trim not a major cut but it is a little shorter and it looks cute:)




Today Izabell had her first haircut!! She was not too excited about the idea. Steven's parents are here and we took Izzy down to the Kid's Salon at the University Village. She was not happy on the drive there and then we we walked into the shop she started to feel a bit better about the idea. When she saw the cars that are the chairs and the other children getting haircuts sitting and playing happily in the chairs she decided she wanted to try also. She does not want short hair and told everyone that she wanted long hair but she did trust us and get a trim. I had about 4 inches trimmed off and had some long layers cut so that her curls would be a little easier to brush. She got shampooed and choose chocolate shampoo and banana scented conditioner and at the end had a dusting of pink glitter put in her hair. She was very happy at the end of the apt. What girl doesn't like hair glitter:) She smelt great also!!

Steven's family arrives tonight and will be staying with us for the holiday:) I hope everyone has a wonderful Thanksgiving!!

School Pictures!!!

She is so cute!!


The J Preschool
3 years 8months

Meridian Park Preschool
3 years 6 months:)

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!