Dr Izabell

A child Life specialist at Seattle Children's mailed Izabell a surgery package to help her prepare for her upcoming surgery. It included a hospital doll dressed in a gown, a gas mask, hat, gloves and some other OR related goodies. Izabell loves role playing and Dr is one of her favorite games. She is having a lot of fun playing with her new doll and was excited to add more goodies to her Dr bag.

Great timing

Today went well! I picked Izzy up from school stopped to get a coffee and got to say hello to a friend who just happened to be there finishing up her coffee run:) I took Izzy to swim class a bit early but was reminded at the front door that her the class was cancelled today! So we have an extra hour before we needed to head down to Swedish for Izabell Doppler apt! So I pulled Izzy bagged lunch out and she got to enjoy it at home rather then in her car seat in a rush. We got to Swedish 40 minutes early and for the first time found parking on the street which saved us a good amount of money!! Most of the street parking there is only 2 hours and Doppler usually takes longer than that so the garage is usually our only choice. There is one street though that has no time limit and today it had one open spot:) Izzy and I walked around outside and took our time heading to the apt since we were so early. Izzy told me that the walk up the hill was very hard and she needed to rest when she got to her apt:) Wonderful!! She needs to sit still for the Doppler so that worked out well! She did such a good job that she was done with the 1st half in just over an hour!!! So we walked back to the car and amazingly made it home with out traffic!! As I walked though the front door the phone rang and it was one of her neurologist calling. He had talked with the others and they have decided that they do want her to have a CT angiogram on the 19th. The paperwork came in the mail for this today and the orders say that she is scheduled for a ct scan and did not mention the angiogram so I let him know and now he is calling her neurologist at childrens to make sure everything is on track. I'm not sure how we got such good timing today but I am thankful for sure!! Now we are home and resting. I am hoping to get rid of this cold soon!! Izzy has the other half of her doppler apt tomorrow hopefully tomorrow will go as smoothly as today went:)

Random Pictures

Izabell loves the movie Barbie and the three musketeers! Her Bubbie and Zaydee sent her a card with some money and when Steven and i took her to the store she choose to spend the money on the Three musketeers dress! We decorated some wood stir sticks with glitter to make a sword and now she is a crazy musketeer and dresses up every day after school!

Izabell was very excited to attend a friends Birthday party in January. She picked out the present card and gift wrap all by herself. She also said that she had to carry the gift by herself and ring the bell because she was going to her friends party and she is a big girl now!

This picture is hilarious!! We where at Missy's house and Izzy was downstairs playing with DJ and his neighbor when I saw them both playing in the little tub. I wanted to get a picture but they saw the camera and Izzy grabbed DJ to make him look away to avoid pictures! lol!! She grabbed his head and turned it away so he would not look at us! lol! Bossy girl!!I looks like she is kissing him! Really they are just hiding from their camera happy moms!

Izzy and Stella had a lunch and played at McDonald's after swim class last week! They had a lot of fun cheesing it up for the camera!!

Staying busy and making plans:)

We are busy! lol! We have always been busy but I have found that I am much slower at updating Izzy's blog while pregnant busy and tired!! I want to promise that I will post more after the baby is born but I doubt that I will have more energy then either. I will promise to do my best to share our adventures and pictures with you all but do ask that you be patient with me and my sporadic postings! lol! We will of course update as much as possible and keep you all informed on Izzy's progress and the little ones arrival:)

Izabell's back brace has been irritating her skin and she had some areas that looked very sore. She of course has not complained about the areas at all but I made an apt to have the Drs check her brace. Yesterday I took her in and they made some changers to her and ordered some new brace shirts for her that will hopefully help the areas they can not change. I caught a cold and so I am tired and coughing a lot but thankfully Izzy is well:) Hopefully she stays well and tomorrow I wake up feeling much better. Tomorrow and Friday Izabell has Doppler imaging at Swedish hospital. She has this test every three months and it is usually time consuming so I am hoping to feel better so that I have more patients and can help Izabell though the apts.

Izzy waiting at the apt spinning herself on the stool!! She is getting so big!!
We have been busy around the house and have started to get things ready for when the baby comes in May. We are also getting ready to switch Izabell to a big girl bed and then w e will turn her toddler bed back into a crib for the baby. We plan to have them share a room after a few months so we will set the crib up in her room. We needed to move Izabell's dresser to our room to make room for these changes in hers. We ended up rearrange furniture in our room to fit the dresser and the cradle. I was expecting our room to fill full with the changes but it feels open and tidy which is wonderful! Izzy was excited to switch her cloths to a bigger dresser and was a big help this week . She is getting so big!! I am hoping to get a lot done this month because I know we are going to be very busy from here on out. Nothing new really...

Steven's parent arrive next Friday and his brothers will be here Sat! All the boys will head up to Canada for the Olympics while Ina Izzy and I stay in Seattle and enjoy some girl time. I am hoping to take Ina and Izzy to the Phiny chocolate factory for a tour! Izzy is looking forward to seeing evryone!

Izzy has surgery on the 19th. She is now scheduled for a CTA scan then airway scope followed by the eye surgery. I talked with the child life specialists this week about the upcoming surgery. We started a plan to help Izzy understand and cope with the upcoming surgery. I have asked them to help before and Izzy usually does great but she is nervous this time so I though I would talk with them again. They are sending her a care package that has some medical role playing stuff a book about surgery and a doll that she can role play with. We are going to create a care plan for the day which will cover some of Izzy's worries. She has had so many procedures that she used to panic when we changes her into the hospital gown so they are sending one to our house so we can dress her in it at home which has helped the last couple times. We also try to have them wait to put the face makes on until Izzy is sedated. They are simple steps but they do make a big difference and with how many apts and procedures Izabell endures it is important to make them all as calm and pleasant as possible.

My mother is going to arrive from the Marshal Islands March 1st!! We are looking forward to her visit as well!! Izabell and I are also going to my cousins wedding that week in Chicago. My brothers family will fly out there as well. While there we hope to visit with some PHACE families in the area maybe on Izzy's birthday day:) Izabell has a Drs apt in Wisconsin. We will fly home on the 9th and will enjoy some time visiting with my mother!! At the end of March Steven Izzy and I will fly down to San Fransico to visit with Steven's brother (Goon aka Daniel) and fiancee for a weekend of hockey games:) My father will come join my mother here in April. We hope to have time to visit and of course will have to share them with my brothers family and my Aunt Kitty's family while they are here as well. The baby is due May 12th. My older Brother Gary and his wife are hoping to come visit everyone and meet the little one while my parents are still here sometime in May. My parents fly home in June a few days before Steven Izabell baby and I fly out to North Carolina for Uncle Goons & Betsy's wedding:) I am looking forward to the busy months ahead!! We will enjoy having so many trips visitors and the extra help!!

We will be very busy with all of the trips visitors and new baby plus the normal schedule of our lives and Izabell's many Dr apts. I will try my best to keep up with the blog so you can share all the fun:) I have lots of photos to share form the last couple of weeks and hope to post them soon:)

I have a cold and this morning before I went on a cleaning spree Izzy was snuggled on the sofa with me and she was watching Sprout. She had her little fingers laced though mine and I was tuning out the TV drinking tea hoping to sooth my scratchy throat when Izzy started pointing at the TV and shouting for me to look. She was so excited! I look up at the TV and there is an add for pillow pets. Izzy begins chatting away....

" Mom look I have that one right there!! Look I can fold my Jammie's in it and use it for a sleep over mom!!! Mom I can even take it to grandmas house when I go there! Mom look I can take it anywhere!! They have a website mom! Mom you can even put it in the washer if it gets dirty!!! Wow I did not even know that!!! Mom look its a pillow and it is a stuff animal too! Kids just love pillow pets. Mom did you know that?!! Wow! "

Any fact the add gave about the pillow pet Izabell repeated with excitement! I was laughing so hard by the time the add was over Izzy asked me if I was ok!!! She got her pillow pet for Hanukkah from her Bubbie and Zayde and she loves it!! She sleeps on it every night!

Izzy has us cracking up all the time! She is quick, smart and has an impressive memory! She is also quite feisty and stubborn as well! At bedtime she has to have her pillow pet dot side down ( she has the ladybug) and wants an alarming amount of blankets piled on her! I tried telling her she could only have three and I tossed the other 4 she wanted to the corner of her room the other day. After she was all tucked in she called me back to her room because on her her blankets had slipped off and she wanted me to fix it. She asked for the others again and I told her she did not need that many and she rolled over and huffed goodnight! lol!! I left her room but a few minutes later heard her little footsteps but she did not come out of her room so I waited about 10 minutes and when I went back to check on her she was asleep and had the entire pile of blankets over her!! She did this for a week and now I just pile them all on her and then go in after she falls asleep and take half of them off! The funniest part about this is that she will wake us up in the middle of the night crying because her blanket fell off and ask us to tuck her back in! Really she can get up and sneak all her blankets on her but then a few hours later she can't pull one over her?? At least she is in her own room all night long now !!


Last week Izabell had her pre opt apt with her eye surgeon. She did a great job following directions and the apt was simple. She liked all the "games" they played while checking her eyes and asked for a special treat form the cafe after the apt "for being so good mom" The assistant said that her eyes have not changed any and surgery is is three weeks so the Dr will decide if he is going to need to correct both her eyes or just one from these tests.

Izabells brace is rubbing her skin under her arm causing it to turn red. Redness is common and the skin gets thicker in areas from braces but this time her skin looks like it may be breaking down. She also itched it and now has a sore in the area so I am going to try to get her into the othrodic dept tomorrow to see what we can d to help relive this problem. She has not complained about anything but an Itch but her skin looks very sore in that area and I do not want her to get an infection. Her butterfly necklace broke last night while she was sleeping and the charm was missing when she woke up. I though it was in her bed or her room so did not worry to much about it thinking we would find it when I helped her clean her room later. After her room was clean and we did not find the charm I wrote it off as gone. Sadly it was not lost. I found her charm when I took her brace off for a break. It had slipped down into her brace and spent who knows how long digging into her skin! She has a butterfly shaped welt and it even broke her skin in one spot! That had to have hurt but she of course said nothing about it even after I took her brace off!! I did notice her rubbing her back in that area while her brace was off but she never complained! That had to have hurt or at least been annoying but she said nothing!! She has such a high tolerance! The necklace is now sitting on the counter waiting for me to fix the clasp. I am still angry with that little piece of costume jewelry and don't want to fix it yet but Izzy will be asking for it in the morning unaware of the sore it caused on her back so I better go fix it for her!

The mailbox will survive!

Since we moved Izzy into her own room she has fallen asleep in her bed on her own but she has always woken in the middle of the night and wandered to our bed. With Izabell is in the new brace and my expanding belly our bed is starting to feel small! Steven is a heavy sleeper and sleeps though almost anything where I wake easily. I wake when Izzy chats though the night, I wake when she flops over in bed sending the metal bar of the brace into my back, I wake to both of them snoring though the night and in the morning I wake up tired!!

Sweet moments due happen while she sneaks into our bed though. She comes in carrying her ladybug pillow with her by the antennae. I still to her footsteps and when I open my eyes she is already climbing in my bed holding on to her pillow. She loves her pillow pet. She climbs in declares she has had a bed dream snuggles in between us and then rests her hand on my cheek smiles and tells me she loves me. Some nights I tell her I'm sorry she had a bad dream and kiss her cheek and she thanks me for the kiss and rolls over and is asleep in seconds. Other nights she wants to chat about everything and anything. She is always endearing and only has sweet words while drowsy. She wants to talk about how much she loves daddy and share her favorite part of the day. I love hearing her talk but I want sleep and I am not always as endearing as she is at 4 in the morning!!! Those nights end with me telling her if she says another word she is going to go sleep in her room with the door closed. She then rolls over and is asleep in minutes while I lay there hoping to fall back to sleep while feeling a little guilty that I ending her sweet conversation with a mean threat but it is 4am and we all need sleep!!

Izabell has been telling us that she wants a bunk bed for a while now and last week i told her if she slept in her own bed all night long from now own that Daddy and I would get her a big girl bed (twin bed) I did not think that this would motivate her very much but she was excited to try and told us over and over that she was going to do it! So on day one she woke up and stayed in her bed and called for me when she had a bad dream. I sat on the floor by her bed till she was asleep again and then went back to my room. At 8 I got up and went to wake her for school. The seconds her eyes opened she yelled "mom you woke me up! I did it!! I slept in my bed all night!"" She was so proud of herself!!! The first few nights I had to go to her room a few times when she woke to help her fall back asleep in her own bed but by the end of the week she sleep though the night with out trouble or at least without waking us when she had a bad dream!! We all slept though the night!! As the week progressed she has asked when she will get her big girl bed, one with a ladder! Tonight at bedtime she protested her bed a little telling me she did not like it and that she was a big girl! Ahh she gets her patients from me:) I told her that we are going to pick her bed soon then we will have to wait a few weeks for it to come in the mail. I then asked her how big she thinks the box will be. She got a very concerned look on her face and I was expecting her to complain about the wait when she said

"But mom it will break our mailbox!"

It took me a little while to stop laughing so I could reassure her that the boxes would be left by our door and that our mailbox will survive! I love her so much she always thinks things though and has a opinion now a days!! She is a lot of fun!!

I am not super excited about a bunk bed and have been researching low and mid loft beds for her instead. The fall from a low to mid size loft is much less than from a bunk bed and Izzy is not the most agile child. We plan to put a mattress on the floor under the loft where she will sleep and let her keep stuffed animals or such on the top mattress. She has already been told that she may not sleep on the top until she is bigger. We have found some we like and now just need to decide. Most likely for her birthday Izabell will get her very own big girl bed!! Her crib which she did not sleep in until it was converted to a toddler bed will be moved out of her room for a while before returning as a crib for baby thunder.

I already miss Izzy's sweetness in the middle of the night but I love getting more and sounder sleep! I find the mornings are easier to handle now. I only have a few more months before I'm waking every two hours to the new baby so I better enjoy the rest while I can!

BUSY Izzy

We have enjoyed a nice break from Dr apts! Izzy is settling into her new brace and she is doing great now. She did have a bit more of an attitude following all the apts but is slowly coming back to her sweet self. I think I would have an attitude as well. All of the Dr apts are exhausting and stressful for her and she does act out a lot more after she has a group of them together like she did this past month. I have been so worn out and tired by the end of the day that her blog postings have become sparse. I will of course keep posting new updates here and try my best to keep everyone up to date with Izabell:) She is of course a very busy little girl!

Next week she has another eye apt. She will see the assistant who will check for any new changes and take new measurements so that the surgeon can decide if he will be doing both eyes or just one. It sounds like she will need both eyes corrected at this time but I will update when I know more of course. We have had some challenges with scheduling all the needed tests during the upcoming surgery and are still working on the details but the plan is to have her airway scoped by her ENT once she is sedated then she will have the eye surgery and possibly a CTA scan. I am trying to contact all her DRs to make sure than any blood work that they would like done gets taken while she has an and is sedated so spare her anymore stress.

Last year one of her neurologist said that Izabell will need yearly CTA scans to follow her Cerebral venous malformation especially since the last scan showed that is doubled in size in a year. Izzy has Doppler studies every three months to follow her cerebral arteries but this does not show if the venous malformation has changed. If it counties to grow it could put her at risk for hydrocephalus.

MRI/MRA are the safest way to follow this but Izabell is not allowed this test because of her pacemaker so our option is a CT scan. CT scans expose her to radiation so yearly CT scans are not ideal since that increase risks from radiation exposure. At this time her neurologists are going over the risks of having the CTA and the risks of not having them and are tyring to decide if she should have one this Feb or not. the order is already in for her to have one in Feb but her other Drs are researching and talking with oncologists to try to figure out the safest way to follow Izabell without causing more problems in her future. We don't want her in an emergency situation because we waited to see what is going on but we don't want to increase her chances of getting cancer as an adult because of all the testing she has though her childhood. It seems like with Izabell there are always going to be hard choices for her Drs and us to make. I am so grateful that she has such a caring group of Drs who consider her future and help with research when we come to these choices. So we are waiting fro more phone calls from her DRs and will post updates when we know more about this as well.

Izabell apt with her vascular ENT went great! Her Dr is very happy with how Izzy looks and sounds! Izzy had a hearing test after the apt to make sure her ears are still doing well. She had some minor improvements with her hearing which is great news!! Her left ear is a normal levels and her right ear is just below normal levels which we did not doubt since she now talks or sings 24/7. Her ear tube is still in place and Izzy will need to be followed until she is 5 in this area to make sure she stays stable. If the tube does not fall out by 5 then she will need it removed.

Izzy is doing great in school and still loves riding the bus every morning! She is also improving very fast in her swim class! She loves to swim and likes to try everything on her own! lol

Steven, his brothers and father are all going to attend the Olympics in Feb and he is looking forward to that!! Izzy's eye surgery is scheduled that week so he may not be here for it but his mother will be here so we will have a wonderful helper though it all. It seems like January has slowed to a crawl for me! I'm not sure if it is because of Izabell's upcoming surgery or the fact that I'm now 6 mths pregnant and getting a bit uncomfortable or if it the fact that we are looking forward to so many exciting visitors and trips ahead. In Feb Stevens family will be here! In March Izzy and I are going to travel to my cousins wedding and visit family and friends in Chicago. My mother is coming to stay with us in March as well. My father is coming in April the baby is due in May. Steven's brother is getting married in June!! We are in for a very busy and exciting Spring:)

Update

Izabell had her orthopedic apt on Wednesday. I has a lot of questions for the Dr and was upset about the inability to get a response from him that we delt with over the last few months and was thinking about switching Drs all together. At the at he was apologetic about the lack of communication and offer a solution to this problem which is a start. He also took the time to answer all of my questions and had very good informative answer at that. Izzy's in brace (new brace) xrays look pretty good her curve is about 5 degrees different in the brace which is 20% and that was the goal so hopefully this brace will help manage both the upper and lower curve better. I asked him about the different treatment options and why he did not want to put Izzy in the Providence night brace and said that studies show that the night brace is not effective and to have her stay in this one at night if she tolerates it. He had a lot of facts and information to back up his opinions and now I will email Shriners and see what they think about this choice. He did offer more information about casting and told us if we do chose this that Utah would be a good choice. He explained some of the risks of this skin irritation, sedation every 3 months. I really appreciate all his knowledge and have decided to keep him as Izabells Dr for now. If we can improve communication between apts. I also asked him to send more detailed clinic reports out because I need to share the information he gives in clinic with my family so we have help and support with the decisions we make for Izabell. He said he would do this so and I am looking forward to the report form this apt because I would like all the information in writing. Izzy did great thought the apt. She took the xrays by herself since I am not allowed in the room while pregnant and was happy and brave the entire time:) She is a little rock star! She was tired and board waiting in the room and I don't blame her since she had a long apt the day before as well. Nurse Amy came to visit her both days and brought her treats both times:) She loved having Amy stop by and loves the new blanket and is still talking about the yummy cupcakes:) Thank you Amy you made her day a lot brighter!!



On New Years Eve I got a call from Children's Hospital wanting to schedule a follow up apt with the neurosurgeon to go over Izzy's CT scan form last Feb. I was taken back by this since the call was out of the blue and almost a year late! The woman on the phone was very nice and patient. I told her that Izzy is already due for another CT scan and that I would like her to talk with the Dr and call me back before we schedule any apts to make sure that we can everything ordered and scheduled the right way. I also called all of Izabell's neurologists and let them know about so they would have an opinion on this. They want a low dose CT scan since the radiation is not good for anyone but is known to cause even more problems for younger patients. The woman called back thought the week ad has been talking with radiology, the neurologists and surgery to help me schedule the CT and follow up with good timing. The orders are in and we have the follow up scheduled but I am waiting to schedule the CT angiogram in hopes that they will be able to schedule it with her eye surgery so Izzy can avoid another sedated procedure. I am not sure if they will be able to do this since the CT scans and the OR rooms are not connected but I had to try. I am waiting to hear back from her now. I have been very impressed with how helpful she has been!!

There is a new PHACE study at the Children's Hospital of Wisconsin's. This is wonderful news. It is a Longitudinal Study of Neurological, Cognitive and Radiologic Outcomes in PHACE Syndrome. The children with PHACE need to be 4-6 years old to be part of this study. We are happily enrolling Izabell into it. The timing for us is working out quite well also! We are going to my cousins wedding in Chicago March 6th, Izabell turns 4 on the 7th and then on the 8th she has an apt at the Children's Hospital in Wisconsin to enroll in the study! The Dr's there have taken time to see us while we are in the area and one has agreed to come in from maternity leave to see Izzy that day. We are very thankful for this because otherwise we would have had to make plans to comeback in the late summer early fall with the new baby in tow as well. My Aunt Sherry is going to help Izzy and I travel down from Chicago to the apt and Steven will likley need to be back in Seattle for work. I am so thankful for all the help everyone has offered for this trip!! We are very excited about the study and know that this will be helpful for many PHACE families and caregivers in the future!! We are also very excited to see everyone in Chicago and attend Ricky's (James's) wedding:)


I spent a lot of time on the phone lately with the Drs and hospitals trying to get all of Izzy's apts straight. If I have missed your calls and have not returned messages form anyone I am sorry and I hope you will call back because I know I have been distant but my pregnant brain can not remember who called in the pat week! lol !!