Happy almost Thanksgiving everyone!  There is so much to be thankful for this year with Zoe.  She has once again proved herself to be a miraculous child.  Since the new year she has started walking, started school. started talking more, gone on vacation, become her own charming person, and numerous other things too many to count.  We are so blessed to have her with us and to learn from her.  It's hard not to get introspective around this time of year,  I start wondering why we are part of the 50% of CDH families blessed enough to be able to take their child home when others don't, why terrible things happen to innocent children, why pop culture gets more attention than finding a cure for childhood diseases and the list could go on.  I think we, or maybe more specifically I , get so caught up in the day to day of life and trying to coordinate and make everything happen that I forget to take time to look at our little Zoe and thank God for her every day.  Lately, the moments that make me happiest are at nap or night time when she is snuggled in my arms and her perfectly round cheeks make her look like an angel and I just want to never let go of her becasue I feel like i can protect her from all the sickness and struggles she still faces.  I try to not think about the what ifs,  they don't help at all.  It never ceases to amaze me how she perseveres,  she doesn't think twice about being hooked to oxygen, getting a shot, going to the hospital or any of her other daily medical routines.  She has even started trying to help us clean her pump cassette at night and likes putting bandages on her dolls and animals... Maybe she'll be a doctor or nurse some day and find a cure for PH and CDH!  I've been doing a lot of soul searching lately and tryign to remember to slow down and love every moment,  not so easy to do when I have a show opening in a week and a child who won't nap.  I will probably never come to terms with why Zoe is with us and other children aren't with their parents, but I will try to remember every day that we are so blessed to have her and that we have as much to learn if not more from her as she does from us. 

Please keep Zoe in your thoughts and prayers this next week,  she is scheduled for surgery on Tuesday the 29th for 4 procedures.  They will  be doing her annual cardiac Cath where they check her lung pressures to monitor her PH,  a bronchoscopy, a CT scan of her lungs and surgically closing her G Tube hole, which still leaks a bit.  Right now she has developed a bit of a cold so hopefully that won't keep the surgery form happening,  I like to get these things done and over with.  

To end on a lighter note, Zoe has developed quite a love for old school muscials.  Right now her favorites are Kiss Me Kate, Singing in the Rain and Annie get Your Gun. There is nothing that makes me smile mroe than watching her dance and sing to "Too Darn Hot" from Kiss Me Kate.  She steps around like the girl in the movie, raises her hands, jazz hand style, and says "hot Hot"  ADORABLE!!  

 

Happy Thanksgiving everyone and here's to a lovely start to the holiday season.

we have had a rough couple days. zoe was admitted to childrens on saturday with pneumomia. that was our fourth hosptal stay in the past four months.  she was started on antibiotics and oxygen as usual.  the antibiotcs seemed to help right off the bat, but we were curious as to why she keeps ending up in the hospital.  after much discussion with cardiology and pulmonalogy we decided to start her on some new lung medications.  she will be using xopenex , a bronchial dialotor, and also some lung steroids that will hopefully help maintain lung function so we dont have to continue coming in every month.  zoe is such a trooper through all this.  we feel so bad she has to go through it all butat the same time are so grateful to have her with us and so blessed that she is able to live a relatively normal life.  please continue your prayers that she heals quickly and remains healthy throughout the winter.

WHat a busy few months we've had.  Zoe's big 3rd birthday party follwed by a Strom family trip to Alaska,  all 18 of us! 

Zoe's bday party was super fun.  She wanted a Snow White theme this year and so I made her a dress and to wear and a little headband top match.  We had great weather and lots of Zoe's friends were able to come most of which dressed in costume also.  We had fairies, minnie mouses, princesses and more- so cute.  We also had a craft table at her party where the kids were able to decorate treasure boxes and apples.  This was Zoe's favorite part of the party,  we couldn't tear her away from it.  It was so funt o seeher interact with all her friends and of course to watch her eat birthday cake.  We are so blessed to be able to celebrate another birthday with her and to have her in our lives.

We follwed the birthday party with a trip to the county fair where Zoe couldn't get enough of the merry-go-round and the rollercoaster ride.  Mimi, Ethan and Savannah and Jordyn, Zoe's cousins on JAson's side, were also able to go along with most of the cousins on my side, so it was a busy fun day.  There is nothing Zoe loves more than be surrounded by her family and all the kids, she interacts so well with them and they are all so sweet and gentle with her, so fun to watch.

we had another brief hospital stay at the beginning of Septmeber.  Zoe woke up from her nap one afternoon and was running a fever of 104.  The first thought when she gets a fever this high is that she could have a line infection, so blood work was immediatley done and we were sent to Childrens.  We were there for a couple days waiting for the fever to subside and for test results.  Everything came back negative so they think she got some sort of virus that hit her hard and fast.  She was on 02 for a few days and missed the first day of preschool but was able to start the following week.

Preschool has been so great for Zoe and I both.  She started 2 weeks ago and goes 4 times and week for 2.5 hours.  Her teacher is amazing as are all the para educators and therapists.  We are so blessed to have a program like this available and so close.  She will be getting physical therapy, occupational therapy, speech and whatever else they think she needs.  Theh teachers all took the time to learn about Zoe's meds and IV pump so they are trained if an emergency should happen,  a huge relief for me since I don't stay in class with her like I did at Hollyridge.  she has about 9 other kids in the class with her, all of whom are super sweet and today when I picked her up from school , they all yelled "Bye Zoe" as she walked to the car.  Love it!

We had the great fortune a week and a half ago to go on a week long Alaska cruise with my whole family, all spouses and all grand kids.  My parents had been wanting to do this for years, but someone had always been pregnant and then there was Zoe.  Finally everyone was healthy enough that we decided to do it.  All 18 of us took the ferry to Seattle and got on the MS Amsterdam,  Holland America, bound for Alaska.  I had always thoughts crusises were kind of lame, but let me tell you, after a week on one, I am a cruiuse convert!  This was the first time in 3 years I think I have relaxed.  it was so nice to have everything in one location so we didn't have to worry about Zoe's med and all that and we could keep her on her schedule.  Everything else is taken care of for you, great food, no dishes, no laundry (until you get home)  no having to coordinate hotels and traveling-  I loved it,  I now think it is the only way to travel with a child.  We got to sail into Glacier Bay,  went to Juneau,  Icy Strait Point in Hoonah,  and Ketchikan.  We all had such a great time and can't wait to do it again soon.  It was also so funt o spend time with my family.  We do get together quite often since everyonw lives close but it is usually for a holiday dinner and everyone is busy, so this way we all got time to talk adn catch up-  priceless!  A huge thank you to my mom and ad for planning this amazign trip none of us will soon forget!

Before we went on the crusie my sister, Naomi, and I had the chance to record a StoryCorps interview about Zoe.  it was a really special experience to share with my sister and also an emotional one to relive Zoe's first days and months.  We do have a copy of it if anyone wants to listen you can email me for the link.  I am always grateful for how strong my family is and how much they help us through this journey.  I am a very fortunate girl to have such a  close knit family, and i don't know what I would do without them.

 

And now for the photo recap...

 

the birthday girl

 

Fun at the craft table

 

At the fair with Mimi

 

At the Seattle Aquarium with Cousin Ethan

 

Zoe being silly on the crusie ship

 

At Mendenhall Glacier in Juneau, Alaska

 

Dancing with Cousin Bodie on the crusie.  Zoe was a dancing queen!

 

Oh, my goodness, where does time go.  I haven't updated in forever.  It's been a bit of a chaotic and unexpected few months for us.  Zoe has had 2 unplanned hospital stays.  Both of which were for unexplained decreases in her oxygen stats.  Both happened pretty quickly.  The first was mid June when jason was in LA.  His first vacation in a long time and the day he leaves I end up taking Zoe to Childrens.  We were there for 4 days and all her tests came back negative so they still aren't sure what happened.  She was on 02 for about 3 weeks that go round.  Then a couple weeks ago we had had a great Sunday,  a birthday party and beautiful weather and Zoe woke up crying funny around 11PM.  I went into check on her and she was convulsing all over her body.  All her muscles were super tense and she looked paniced.  She was cognacent of me the whole time so we were told she wan't havign seizures.  Her 02 stats dropped pretty quickly, probably because she was terriffied and in pain and it caused her blood to shunt.  The paramedics were here in 2 minutes and becasue of the unknow of it all they decided to airlift her to Seattle Childrens.  This was a first for us,  lots of ambulance rides before but no helicopter.  Jason and I couldn't go with her, we had to take the next ferry-  terrifying.  By the time we got to Childrens she was calemed down, not convulsing but still on a quite a bit of 02.  We were in the hospital 2 days this time.  There were also no answers this time around, I think she got some sort of heat stroke and heat cramps.  So now Jason and I are are evenmore hyper-vigilant about making sure she stays hydrated.   Needless to say it's been an odd late spring/summer.  

Hopefully that is all the hospital stays for a while.  We are now tryign to make the most of out northwest summer.  Zoe has been loving picking vegtables from the garden (peas and raspberries are her favorites).  We 've taken her swimming a few times with her cousins which she loves.  The Bainbridge pool has this long eclosed tunnel slide that she loves- crazy kid.  She has also become an expert hanger sorter and button sorter as she "Helps" me work at the costume shop.   We also took her to her first big screen movie, Winnie the Pooh.  She of course loved it although I think she may have liked the preview for some film about monkeys even more. 

Up next, an art show for me, the start of our farmhouse renovation and the big 3rd birthday party.  This year is a Snow White themed party, chosen by Zoe.  She is now like all toddler girls and is obsessed with all things Snow White, Belle, and Cinderella.  I know there is nothing wrong with her eyes becasue she can spy items with these characters on them a mile away.  Her speech is progressing well, still a long ways to go, but one day at a time.  She continues to grow her gross motor skills and pushes herself each day to do more,  she's getting rather fearless-  we love it!!

She finished up her Early Development preschool last week and will start at Wilkes Elementary school in a few weeks.  My dad and I both went there ( and Jason went there for a few weeks) so it's very special.  She is in a developmental preschool where she will attend school 4 days a week for 2.5 hours.  She will also recieve PT, OT. and speech.  

Every year around her birthday, we start to think about how far we've come and how we never thought we'd be here.  Zoe is a miracle and she doesn't even know it.  Her zest for life and her fearlessness are something to marvel at.  We have met some of the most amazing people on our journey with Zoe,  parents and kids with special needs who we never would have known who help us keep it all in check and tell us to take a breath when we need to. We are blessed to have Zoe with us and love what she teaches us as parents and people.  It hasn't necessarily been an easy road to travel and it has definetly challanged  our day to day life, but Zoe is worth every trial and tribulation and when we hit some of those big milestones we only dreamed about, it's enough to make you weep.  These special needs children are some of the most resiliant, determined, grateful and loving beings, we could all learn a lot from them.

HAPPY EARLY 3RD BIRTHDAY ZOE!!!

 

Zoe at 1 day old.

 

 

 

Zoe these days,  trying to fill some BIG shoes.

 

Zoe in the pool with Aunt Tara and the cousins

 

Zoe on a carousel in downtown Seattle with Jason

 

The machinery that kept Zoe alive.  You can see a tiny piece of her head in the center of the bed.

 

 

WE LOVE YOU ZOE!!!

Here's to many more years of adventures and oppotunities to wonder at what the world has to offer.

I know, I know, It's been way to long since I've updated, but somehow I can't seem to be superhuman I want to be and I just can't get it all done.  Oh well, at least Zoe is kicking some butt for me.  She has had a great few months in terms of motor progression and speech.  She has now been walking for almost 4 months and is now a whole new kid.  She has started walking outside on gravel and unsready surfaces and doesn't get to phased by it.  She often brushes our hands aside when we offer to help and says " I do it".  She is still a bit hesitant about stepping from stone to stone or up and down from a curb, but she's trying.  it's amazing how big her legs have gotten since she started walking.  She used to have these bean pole legs and now there is actually a thingh and calf muscle. 

She just had her evaluations for the school district pre school and did really well.  Her fine motor showed only a slight immaturity, her receptive speech was spot on where a 3 year old should be and of course, like we already knew, her gross motor and expressive speech are delayed quite a bit.  Her gross motor is around that of a 13-15 month old child.  What was interesting about the testing though is that all aspects of gross  motor were pretty similar which means she is just delayed and catching up on her own schedule.  makes sense since she didn't do much moving for a year and half or so.  She will be startign with the Bainbridge School District in the fall at Wilkes (my old elementary school) with a really great teacher.  Jason and I got to go sit in class a few weeks ago andobserve.  Such a great set up and the teacher is AMAZING.  We took Zoe to meet her last week and it was mutual admiration at first glance.  She will be going to preschool for 2.5 hours a day for 4 days a week.  The school staff will be trained in how to do her IV med so that I don't  need to be there all the time.  This means I actually get time to exercise 4 days a week for the first time in 3 years - YEAH!!

Zoe recovered from her cardiac cath and PDA closure quite well.  She was in O2 for a few days but came off it quite easily.  We took her back in for an ECHO a month later and the numbers didn't look any different.  her lung pressures were still in the 70's.  It was a bit dissapointing, I think I was hopign it would make an immediate differnce but it didn't.  her cardiologist isn't too worried, she juat said that now we know exactly what we are dealign with in terms of zoe's PH and that the PDA wan't the entire culprit.  We have gone up on her Sildenafil (baby Viagra) does a bit as well as her IV med.  She also just started a 3rd PH drug last week which works to combat PH in a differnt way than the Floland and Sildenafil.  The hope is that the three together will make a difference.

Zoe had a bit of a wierd week last week, on Tueday AM she got super blue all of a sudden, bnot what you want to see in any kid, let alone Zoe.  We bumped her O2 up to 1 Litre and than seemd to help some.  I took her in to the pediatrician for x rays and they looked fine so we scheduled an ECHO at childrens on Wednesday. The ECHO looked great, in fact her lung pressures were down in the 60's.  Tehy started her in a 5 day dose of antibiotic and it seems to have helped.  There is still no real explanation for what happen,  the only thing we can think of is that her bottle of Sildenafil had almost expired so maybe the potency wasn't quite as strong as it should have been.  Anyways,  since then, she has looked great.  Nice and pink adn back to eating tons.

We also just got (or I should say, may parents just got) Zoe a drysuit so she can go swimming.  Becasue of Zoe's central line, she cannot sit in water or get it wet.  Her baths have always consisted of 2 minutes in the water with a plastic patch over the line.  The new drysuit allows Zoe to be totally in the water and play like a normal kid.  We took her down to my parents jaccuzi tub last week and let her splash around- SHE LOVED IT!!!  She sat in the water for over an hour just playing and rolling around. She played on her belly adn kicked her legs like she was swimming, she put her face in the water, all is all she had a blast.  Hopefully this is the start of many summer days in the water.

In addition to all this, Zoe got her first tricycle, pulled her G-tube once and for all, got a big kid bed, discovered the joys of cooking and baking and discovered how fun it is to be a mommy to her own baby dolls (even though she likes them naked as possible at all times).

I'm sure there are more things I'M forgetting but for now I'll let the pictures speak for them selves.  Thank you as always for all the continued prayers and support for Zoe and all of us.  Happy Spring!

 

moments before we pulled Zoe's G-Tube!!!  March 2nd, 2011

 

2 more of Zoe's buddies who did a successful rapid wean at Seattle Childrens

 

 

Zoe with her beloved baby stroller and Dolly

 

Zoe loving on Auntie Courtney's new baby, Claire

 

Zoe on her new tricycle

 

Zoe and Eva (with Thumper) on Easter

 

Zoe and Papa on Easter at the Henry's

 

Zoe riding a pony at the Corey Day at the Farm for Special Needs Kids

 

Zoe in her drysuit- ready for summer fun!

Zoe and Sara Rawlinson with their backpacks.  Sara has been one of Zoe's biggest supporters and now we get to be hers.

Zoe had her surgery to repair the duct outside her heart yesterday.  We checked into Seattle Childrens Hospital around 7AM and they took her back for surgery around 8AM.  She did great, luckily she is still young enough that she doesn't quite know when something is going to happen until right before.  As long as we are with her, she's alright.  It also helped that they gave her some happy drugs that make her see flying bunnies or whatever a 2 year old might think is funny.  The prodeure took about 2.5 hours adn went really smoothly.  The size of the hole was rather large so they had to use a bigger device to close the hole than they originally thought, but it went in well.  The whole thing was done through a cardiac cath- which means that it was all done through the major artery in her groin.  Pretty amazign technology.

She recovered great and was happy as long as we were holding her and reading her books.  We spent the night in the hospital for observation, but she did really well.  She is still on a bit of supplemental O2 for a couple days, but will hopefully be off soon.

The results of the cardiac cath were about the same as last time.  No significant changes in the lung pressures, but her cardiologist is hopeful with a little time that closign the PDA will make a significant difference.  we go back in a month for an ECHO to see how everything looks.

The other exciting news is that we got the OK from everyone in GI and cardiology to pull Zoe's G-tube.  So that is our evening project tonight.  Supposedly, most of the time they close on their own in a few weeks. All we need to do is keep it covered and change the dressing in the mean time.  If it doesn't close entirely in a few weeks, we will have to go back in and have a few stitches put in surgically, but hopefully that is not an issue.  

Thank you for all the prayers and support for Zoe and Jason and I the last few weeks, we so appreciate it and it helps so much to know that Zoe is so loved.

I'll post more pictures once I get my new camera figured out, including one of Zoe's stomach before and after the g-tube!!!!

ZOE'S WALKING!!!!!  I know I should have posted this a couple weeks ago, but in between opening another theatre production and Valentine's Day at Flowering Around, I haven't done much on the computer.  Anyways, on Saturday January 29th, Zoe started walking and hasn't stopped.  Jason and I had just gotten back from a birthday party for a friend, my parents had been watching Zoe  and when we went to pick here up we were all sitting on the floor near her and I had her coat or somethign she wanted and my dad stood her up in front of me, and she took a hesitant step and so I backed up a step and she took another one and so on.  Jason, my parents and I all got so excited and were cheerign which of course only egged Zoe on, and so for about 30 minutes she just walked back and forth between the 4 of us- AMAZING!!!  It all happened so out of the blue. She has been so close for so long, but wasn't able to take that leap of faith, but perhaps some applause and a captive audience was all she needed.  How great was it also that we were all there to witness it for the first time!

Walking has turned Zoe into a curious and constantly busy creature.  She is now into everything and is not to be stopped.  Her new favorite routine is to walk into the bathroom, sit on her potty chair, grab a piece of toliet paper, wipe off, get up and put it in the toilet, flush the toilet and then walk to the sink where she wants to wash her hands 20 times in a row.  This routine can take place 10 times in a row- goody goody.  Her new found talent has suddenly made her feel like a big kid, I think- not that we're complaining.  She just turned 2 1/2 years old and we have finally made it tthroug two HUGE milestones:  eating orally and walking.  What a great start to 2011.

Everything else that has happened in the past few months seems to be forgotten in the face of walking.  Zoe did have a bit of a respiratory virus around Christmas but she weathered it well.  We didn'y have to go to the hospital and she was only on oxygen for two weeks instead of the month it took last year.  Every year her lungs get a bit healthier.

Zoe just had her 3 month ECHO 2 weeks ago and we got great news.  Her lung pressures have dropped again.  When she was discharged from the hospital at 3 months old her pulmonary pressures were in the 100's. After being on Flolan for a year last April they were in the 70's and then last week they were at 57.  This is still high- normal pressures are in the 30's, but a vast improvment.  In fact she is doing so well and growing so well that we have scheduled surgery to have one on the ducts outside her heart repaired.  She has always had what is called a PDA ( a duct outside her heart that didn't close properly).  For a while when her lung pressures were higher this was actually benefical to her, but now it could potentially be harming her.  She will have surgery on March 1st to plug the PDA.  This is done through a cardiac cath and we should hopefully only be in patient for one night.  By closing this duct, the hope is that the blood won't be able to shunt as easily and that her lung pressures will drop more.  While we are never excited about the prospect of surgery, this one could be a huge step foprward for Zoe and her pulmonary hypertension.

Please send lots of prayers and happy thoughts our way for a smooth and easy surgery and a healthy next few weeks leading up to it.  

 

I know, I know, it's been forever since I've posted, but trust me that's a good thing.  Zoe is doing so well these days, that life is so normal we are now crazy busy with all the things normal kids do, school, naps, play dates, snacks, errands and silly time.

Since September when I last posted, Zoe has made leaps and bounds.  Preschool has been so good for her.  She started at the beginning of September and from the first moment, was never intimidated. The first day of class she grabbed her walker and went right in the room with the other kids, didn't look back at me once!  She is in a class with 7 other kids who also have some sort of developmental delay such as speech or fine motor skills.  She is the only kid who isn't yet walking so she definitely has to do more work to keep up, but the other kids are great incentive for her.   In school they work on gross and fine motor skills, sensory activities, story time, singing, snack time and if the weather is good oitdoor play.  Zoe has discovered the trampoline and she could jump on it for hours if they would let her. 

Her eating has also progressed amazingly well. She is just about back to the weight she was before her tube wean began 6 months ago.  They say it takes about this long to get a kid up to speed with eating, and they are spot on with Zoe.  It's incredible to watch her eat, as long as it isn't yougurt or applesauce she'll eat it.  Her favorites these days are pizza, rotisserie chicken, broccolli, bananas, quesadillas and believ it or not, egg rolls and Vietnamese Pho soup.  She eats things most 2 year old wouldn't touch, although like any 2 year old she has days where she only wants to eat chicken nuggets and tater tots.  Her eating habits and skills have developed so well that she got kicked out of feeding therapy a couple months ago and moved into speech therapy instead.  On Zoe's last day in feedign therapy, one of the other mom's said something to the therapist about how she hoped her child would eat like Zoe some day- imagine that: a kid who didn't eat a thing a few short months ago is now another mom's inspiration!!

Zoe's speech is progressing slowly but surely.  The stronger her eating skills get the more toned her facial muscles get which helps with speech.  She has several words now (most of which are intelligable only in context and to jason and I).  She uses several phrases like "I did it". "All done" and "love you".   She is very proud of herself when she masters a new sound.  Lately her new favorites are animal sounds and singing songs like Old MacDonald and Baby Beluga.

Zoe has now started getting physical therapy once a week in additon to the OT she recieves at preschool.  We are working on strengthening her core muscles, thighs and glutes so that she can feel more confident in walking.  If she can hold onto a finger,  a wall, a table, or somehting like that, she will walk anywhere, but she still doesn't have enough control of her lower half to feel confident enough to try it on her own. Every now and then you can "trick" her into a few steps, but she's so stinking  smart she won't do it again.  We are fitting her for orthodics on Tuesday, which should help her stability and hopefully give her a little more courage to  attempt walking independently.  She's gotten really good with her walker and now uses it to get around whenever it is near instead of just crawling, even though crawling is quicker.

We have been havign lots of playdates with kids Zoe's age which she is enjoying so much more than a few months ago.  Preschool, I think, has helped with this. She is much less intimidated by kids than she was before starting school.   We have done things like zoo trips, aquarium trips, park rides, "playing house" and whatever else strikes a 2 year old fantasy.  She just feels so good these days, I swear, if it wasn't for that little back pack, you would never know anyting was wrong with her.

Zoe's comprehension is also growing by leaps and bounds.  She is starting to giggle about things that are actually funny, like the cat jumping on the kitchen counter, or  us laughing hysterically.  Every now and then she sees something on TV that she now understands is funny.  She is totally into animals these days, particuarly cats and dogs. We adopted a stray cat in August and she thinks it is about the coolest thing ever,  She loves petting Guiness, the cat, and watchign him run aound the house.  She is also noticing that everything has a place and tries to put away Jason's shoes or her books when she is done with them.  She also loves helping with chores like folding clothes, helpign to cook and washing the garbage cans with lysol wipes. 

I'm sure there are a million other things I'm forgetting (this is what happens when I don't write for 4 months)  but I'll try and be better about it.   I've been swamped working on costumes for 2 plays and doing a few art shows with my purses and so the time I used to spend on Zoe's blog now goes to cutting out costumes and doign fittings.  Again, this is a good thing, it means Zoe's is a normal kid with a normal schedule and that Jason and I have a bit more time to spend on oursleves again.

 Zoe and I went to Portland last week with my sister and her daughter to talk to some of the incoming NICU nurses about what it is like to be a parent in the NICU and how nurses can help.  It is always so rewarding to go down there and see our old friends and meet more familes going through what we did a few short years ago.  We now know so mnay families and children that have gone through their own struggles for various medical reasons and  I never cease to be amazed at the strength of these children and the unconditional love of their parents.  If there is one thing Jason and I have learned in this journey it is that we are never given more than we can handle and that with a little faith, a lot of prayers and a lot of love- anything is possible and to never ever give up.

As another Thanksgiving goes by and another holiday season starts, we are once again so grateful for another healthy and happy year.  Zoe never ceases to amaze us  with her perseverence and courage and we are happy to try to keep up with her on her quest to conquer her obstacles.  

 

Zoe with Guiness the Cat

Like Father, like Daughter

 

Zoe as Baby Gaga for Halloween

 

 

Zoe on a playdate in Tacoma

 

At a public art display in Tacoma in September

 

 Life is crazy good here!!  So good, it's has kept me beyond busy and I haven't been able to update Zoe's blog in almost a month- So here goes...

As a result of Zoe's improptu new central lince surgery, she now has perfect skin and is a whole new child.  A little background on this:  One of the side effects of her flolan medication is that it causes her skin to flush a lot to the point where people ask me if Zoe has measles when we are out and about ( Umm, would I have my kid in public if she had measles?  ummmm, NOOOOOO).  The last few months before her new line, her skin had been flushed and rashy 24 hours a day.  The second her flolan was hooked into her peripheral IV in her foot when we got to the hospital, her skin cleared up.  It has been perfect ever since.  Every now and then she gets a few little specks of red color and then it goes away a few minutes later.  It's AMAZING!!!!!  Her cardiologist and pediatriacian have no logical explanation for why a new line a placement would make so much difference  but it has.  The new line rests an inch or so farther down in her heart and maybe this is the difference. Our theory is that the tip of the old line was irritiating her more than she was able to communicate.  Not only does she have perfect skin now, she is happier, more energentic, eating more,  more outgoing, sillier and more self-sufficient.  I know this all sounds crazy, but it's too much of a coincidence to assume that it is all age related, I think she was constantly irritated by the old line to the point it affected all aspects of her life.  When Zoe used to be in social settings, she was very shy and stayed back from the other kids, now she just jumps in.  She used to need to nap at 11:30 on the dot, now she can stay awake until 3PM if she is loving what she is doing.  She is also starting to walk again.  For the last three months, she has not wanted to walk anywhere, even with help.  Now she grabs your hand and walsk all over- to the mail box, at the mall,  to pet our new kitty, around the garden.  Her OT brought her  a walker the other day and Zoe loves it-  she scoots around our house in it and when we take it outside she will go from the studio to the farmhouse up the sidewalk-  INCREDIBLE!

All this new found freedom and eating has led to a much more normal life, almost too normal.  I signed on for doing costumes for two shows for the first time since Zoe has been here.  I'm doing Sound of Music in Decemeber for Ovation Theatre on Bainbridge and Philadelphia Story for Bainbridge Performing Arts in February.  I'm really excited, it's been great to have something to obsess about other than Zoe for once.  It's feels great to have a bit of balance back in our lives.

We just spent a great weekend at my parents cabin on tee lake with a bunch of friends from highschool and their children. Zoe had a blast being the center of attention.  She out ate every kid there, I'm pretty sure, and she mastered the up and down of stairs while she was at it.

We also had a great day at the county fair with my mom and Zoe's cousins. Zoe loved the merry go round and the little car ride.  She must haev gone on them 10 times.  Her zest for  life is mesmerizing and so her joy is so rewarding.

Zoe starts a preschool next week, two hours a day twice a week.  It' s withother special needs children, but it is still all on her own, so we are really excited to see how she will do andwith all the progress she's made lately, I think it's going to be amazing.

It's hard to believe summer is almost over and germ season is here again.  here's hoping Zoe stays strong and healthy and loves life.

On another note,  Zoe was just honored by being asked to be part of a "Wall of Courage" for Seattle Children's Hospital.  This is a permanent photo display that will be shown at the Bargain Boutique here on Bainbridge.  This is an all donation and volunteer run thrift store where all proceeds go to SCH. It is really special to have Zoe be a part if this,  we have so much respect for all that Seattle Children's does for families and patients and feel blessed each day to have Zoe with us.  

Zoe had a great birthday party this year.  She was muchmroe intrigued than last year.  Having everyone gather around her and sing happy birthday was the definite highlight for her.  Nothing more a leo loves than being the center af attention. And this year SHE ATE HER CAKE!!!!!!!

 

One of Zoe's Birthday Cakes

 

Opening presents

 

Talking on her "cell phone" - a favorite birthday present

 

At the fair with Nana

 

At Tee Lake

 

On a playdate with Mama and other friends

   

Zoe on the move in her new walker

 

 

Zoe feeding our new cat, Guiness.  She is in LOVE with the cat!!

 

Well, it was bound to happen at some point. Zoe's central line developed a leak on Friday night and she wasn't recieving her flolan as she should.  So after a call to 911, we were off in an ambulance to Seattle Childrens ER.  They admitted her last night around 9PM and we tried to get as much sleep as possible (not very much).  Zoe was so tired and hungry, they wouldn't let us feed her since she could have potentially had surgery at 7 AM.  SHe finally went into surgery to have the line replaced at 4 PM.  It all went well and and she is now recovering.  We are spending one more night in the PICU and will hopefully be home tomorrow AM.  More later, send lots of prayers Zoe's way for a quick recovery!!