Zoe Holtz Henry

August 12, 2008 4:13AM 8lbs. 4oz. 22.5"

Tuesday January 27, 2010

clock January 26, 2010 10:29 by author Shannin

Sorry it's been so long since I've written.  Just busy with life I guess.  Zoe has been doing great the last month and a half. She has been keeping her food down better than ever and is putting on about 1/2  pound every two weeks-  we are back up in the 25% for weight.  She is 17 1/2 months old now- crazy how time flies with a little one.  She is crawling everywhere and loves to walk if someone is holding her hands. She is talking more- no words just lots of exuberant sounds. 

Last week I went to the Oregon coast with my sister  and her 2 year old daughter, Eva, and Zoe.  We were there for a week.  The weather was crazy blustery and rainy for the most part, but we had a few nice days. We had a gorgeous view of the ocean from our condo and got the girls down to the beach a few times.  Zoe oved crawling on the sand and playing with shells while watching Eva.  She just adores being outside and gets the biggest smiles every time.  It was also a greta trip for her feeding issues.  She got to see another little kid eat 3 times a day.  By the end of the week, she wanted her own plate and utensils. She still isn't really eating much of anything orally, but she loves playing withthe food and feeding it to other people.  The last couple days she has taken some bites of mashed potatoes and some apricot pie.

We were also able to stop in at Legacy Emanuel hospital on the way to the coast and see some of the staff there.  We were also able to take a road trip down the coat a bit more to see one of Zoe's other NICU nurses.  Unfortuantley, my camera's memory card died at the end of our ocean trip and I have no pictures to show for it, other than the ones my sister took-  so sad!  Oh well, I guess we'll just ahave to do another trip to Portland and the coast sometime soon- maybe Zoe and I will take Jason this time.

We had a great holiday season, Zoe enjoyed being out and about with all the family- you know how she loves being the center of attention! 

Keep all the good eating vibes coming this way- hopefully we are turning a corner!

 

 

 



Friday December 11th

clock December 11, 2009 15:24 by author Shannin

 We're off oxygen!!  Zoe came off oxygen on Wednesday and has been doing great.  Her stats have been anywhere from 96-100- YEAH!!  Hopefully this is our one bug for the year and we can keep her healthy now.  Thank you so much for all the prayers and support.

I came across the following story on a care-site I follow for another littl egirl with Pulmonary Hypertension.  Jason and I have bee so blessed to have all of Zoe's medical bills covered by insurance, I can't imagine what would happen if we were told that the medical procedure that could save her life wasn't covered by insurance as these parentys were.  Please take a moment to read this little boys story and pass it on to whoever else you think might be interested.  Thank you and Happy Holidays to everyone!!  I have copied the following directly from the other care page.

 

We follow many children on carepage, we gain support and knowledge into the disease our children have and these children become part of our lives. One little boy is going to die because of the insurance company. I would like to say this is rare, but it is not. I hear this over and over. Someone came up with an idea to save this boys life. I posted it in hope that everyon on my list will send a dollar. Thanks you guys, don't let an insurance company play doctor.

The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010

A VERY Important Request...

Please read as I copied and pasted this message from another child's page, please read it as it has a very simple yet huge request, which could possibly save Kyler's life...

PLEASE HELP ARMS WIDE OPEN SAVE KYLER’S LIFE

Dear Friends,
This morning as I rolled over to hit the snooze button on my alarm clock, I noticed the red light flashing on my Blackberry. Groggy and bleary-eyed, I reached over to see what messages awaited my response. There were two. The first was inspirational, about how every action we take, no matter how seemingly small, matters because, good or bad, our thoughts and our actions are like “stones dropped into still waters, causing ripples to spread and expand as they move outward,” and how just one of those ripples, negative or positive, could become a tidal wave. I pondered this thought for a moment, the idea that individually we all have the capacity to make a huge impact, but if we combine our efforts, collectively, we can change the world. Then I opened the second email. This was the stone.
The Stone:
My friend Jennifer emailed me an article about the VanNocker family that was written by Ronnie Polaneczky for the Philadelphia Daily News entitled “The Insurance Company vs. Kyler’s Life.” http://www.philly.com/dailynews/top_story/20091202_Ronnie_Polaneczky__The_insurance_company_vs__Kyler_s_life.html Five-year-old Kyler VanNocker was diagnosed with Neuroblastoma at the age of two-and-a-half. After enduring a year of treatment at St. Christopher’s Hospital for Children and Children’s Hospital of Philadelphia that included a seven-month stay inpatient and complications that resulted in kidney failure as well as heart, lung and liver disease, Kyler finally went into remission in September 2008 and was able to experience “normal” childhood once more. Neuroblastoma is a very aggressive type of cancer, however, and ten weeks ago, follow-up tests revealed Kyler’s cancer had returned. Part of what makes this particular cancer so relentless is that recurrent Neuroblastoma involves a different type of treatment protocol than an initial diagnosis, and Kyler’s oncologist determined that the only effective treatment option for Kyler is MIBG Therapy. MIBG Therapy is a clinical trial, much like the 3F8 treatment that Baby Billy is currently receiving. But please keep in mind that because there is no cure for Neuroblastoma, these clinical trials are the standard of care and the only chance these children have for survival. Kyler’s insurance carrier, HealthAmerica, does not seem to understand that, however, and despite the doctors’ recommendations, has denied coverage for the therapy because it is experimental and investigational in nature and is not yet approved by the Food and Drug Administration. Out-of-pocket expenses have left the VanNockers bankrupt. Without this procedure, Kyler’s only option is to receive Hospice Care and he will be sent home to die a slow and agonizing death.
The Ripple:
I immediately called Dena Sherwood, a good friend of mine and the mother of two-year-old Baby Billy who was diagnosed with Stage IV Neuroblastoma in July 2008, who, along with her husband Billy Sr., founded the non-profit organization Arms Wide Open Childhood Cancer Foundation, Inc. www.awoccf.org
For those of you privileged enough to know The Sherwoods, you will not be surprised when I tell you Dena has a plan to help.
The Plan:
Dena’s plan was triggered by the story of Noah Biorkman, a five-year-old who was diagnosed with Neuroblastoma in 2007 at the age of three, who went into remission, but then relapsed in September of 2008, the very same month that Kyler VanNocker went into remission. http://www.mlive.com/news/detroit/index.ssf/2009/11/diana_biorkman_mother_of_5-yea.html
When Noah’s mother, Diana Biorkman, posted an article on a CarePage site asking people to send Christmas cards to Noah so they could celebrate the holiday early due to Noah’s declining health, what followed was a FaceBook page, a television crew, and an outpouring of love – and Christmas cards arriving in their Michigan home. One day they received 64 cards. The next day, they received 80,000. Sadly, after a long battle with Neuroblastoma, Noah passed away on November 23rd, but not before receiving 1,000,000 Christmas cards!
The Tidal Wave:
Because this endeavor was so successful, Arms Wide Open is asking you for a repeat performance – but with a twist. Instead of sending a $2.99 Christmas card to Kyler, we are asking for each of you to donate $1.00. That’s it. It is amazing how connected this world has become because of the internet, and if you contribute $1.00 and pass on this email to everyone in your address book and they contribute $1.00, collectively, we can buy the VanNockers time and send them enough money to pay for Kyler’s next MIBG treatment. Changes need to be made to the healthcare system in the United States, and it is an atrocity when an insurance company puts a dollar amount on a child’s life, but this change with insurance companies and legislation and lawmakers is a slow process and, unfortunately, time is not a friend to any of these children battling Neuroblastoma. We know times are tough, but $1.00 is not a lot to ask for and when you add that to the other dollars, IT WILL SAVE A LIFE. Please look under your couch cushions, under the floor mats in your car, the bottom of your pocketbooks, and please tell everyone you know to do that as well, because every dime counts, every second counts, and every single one of you count. If this was your child, would Hospice be acceptable?
We didn’t think so. Give the gift of life this holiday season.
The Address:
Paul and Maria VanNocker
115 East Franklin Avenue
Edgewater Park, New Jersey 08010
With Hope,
Tracy Neilson,
Vice President, Arms Wide Open Childhood Cancer Foundation, Inc.

What a wonderful way to help!



Tuesday November 23rd

clock November 24, 2009 08:11 by author Shannin

So after about 4 days in the hospital we got to go home last Friday.  There had been some complications with Zoe's Flolan central line and so ther cardiologist decided that she would be better off at home with us and we would be fine weening her off oxygen.  Due to her tubing being changed so often and by people other than Jason and I, her line got a blood clot in it  and leaked Flolan so Zoe didn't get the correct abmount of flolan for about 9 hours.  It is hard for all the hospital staff to know as much about the flolan as Jason and I do, due to them only having one or so patients a year on it.  They are fantastic there, but it requires a different set up than we use at home.  It diesn't seem to have bothered Zoe at all in the long term, so we are thankful for that.  It could have happened to a child who really depended on Flolan for survival and could have been devastating.  Zoe's cardiology nurse is going to do some training with hospital staff so hopefully this doesn't happen again.  Jason and I also know what to look for next time and what to reinforce to the nurses so it was a learning experience for all.  Her fever has been gone for a week or so it seemed it was just a matter of oxygen needs. It has been lovely to be back in our space,  Zoe is acting like everything is the same as always, she's such a trooper. Nothing ever phases her.

We've been home about a week and a half now and Zoe is doing great with her energy, feeds, etc.  She is still on oxygen and her cardiologist wants her to stay on .5 litre for another week or so just to rest her lungs.  Last Wednesday we had Zoe down to 1/8 of a litre and she was doing great but the next day she was requiring a bit more oxygen and so we took her into the pediatrician and they took an x-ray.  the cardiologist at childrens thought she might have a bit of a type of walking pneumonia so she was started on another atibiotic. It seems to be helping some,  she isn't as rattly in her lungs any more and except for the oxygen attatched to her nose, you'de never know anything was wrong.  She is crawling like crazy.  standing up, sitting down, moving like a mad woman-  can you just see the cord untangling we have been doing lately!!  Yesterday I decided that I needed to figure out a way to have Zoe wear her flolan pump so she can move more than 3 feet without the cord being stretched.  I was going to make a vest thing with a pouch on it and my sister mentioned those little "harness buddy" backpacks you see parents pulling their kids around with.  So today I went to target and got a monkey one- I took out the stuffing, put in some water proof padding and stuck the pump and icepacks in it and put it on Zoe's back.  It didn't seem to slow her down much.  She did get a bit stuck when she ended up on her back and couldn't roll over because of the weight of the pack-  we'll work on it.  But once she is off oxygen, this should give her total mobility!!  More as it happens.  Thanks for the love and Happy thanksgiving to everyone.  Jason and I sure have much to be thankful for this year!

 



Tuesdsay November 10th

clock November 10, 2009 21:50 by author Shannin
Well it seems no matter how hard you try, there is always a bug floating around somewhere waiting to find some little kid.  Anyways,  Zoe started getting super mucousy and coughing about a day and a half ago and last night she was running a fever of 104. So we called Children's hospital and they told us to go to the silverdale ER.  We were there for several hours with them in consultation with her doctors at Childrens before they decided to transfer her to Seattle for observation.  Zoe and I got to go by ambulance since they had her on a bit of oxygen (0.5liters) and therefore we couldn't transport her by car.  So now we are at Childrens and they are running a bunch of tests to see what is going on.  At first they thought it might be pneumonia but now they are leaning towards more of a viral thing.  She tested negative for H1N1 and several other viruses so now they are runnign some more specific tests. 
The doctors have started her on tammiflu anti-viral and an antibiotic.  So far she is much improved.  She is breathing a bit easier and finally sleeping some.  Her fever is being kept under control with tylenol and motrin.  The poor kid is so distraught.  She is always such a happy kid, I think she juist doesn't understand why she feels so bad and why so many people are poking at her.  We are inpatient at least over night and part of tomorrow and at least until her fever gets under control and she doesn't need oxygen anymore.  Hopefully we'll be out by tomorrow night-  she seems to be turning around quickly.  Send some prayers and happy thoughts our way if you have a chance.
On a happier note, Zoe is now crawling!!  On Sunday afternoon she just figured it out and took off across the carpet, it was amazing to watch.  She has also started waving hello and goodby and is making all sorts of sounds.  She is also just about able to pull herself from sitting to standing-  all things we have been working on in her physical therapy sessions.  It's incredible to see how quickly she is picking up her motor skills.  It all seems to have turned around when we totally revamped her feeding routine and started making blenderized feeds for her with peas, carrots, turkey, peaches and rice milk.  Since we stopped formula she is like a whole new kid: tons more energy, less vomitting, jumping and playing all day long-  you can tell she feels so much better and isn't nauseous all the time anymore.
So that is the latest,  hopefully it is all just a blip in the road and we are home in a day or so.  Wish us  luck, just thought you all would want to know.
Also, we don't need any visitiors right now, she is kind of on hospital lockdown because of the respiratory virus thing.  You can email or call my cell if you have any questions.  I'll keep her website updated  with any new info.  Hope to be writing from home in a day or so.
Thanks for all the love, Shannin


Monday, November 2nd

clock November 2, 2009 20:31 by author Shannin

Can you believe it's been a year tomorrow, the 3rd, since we left Seattle Children's  Hospital with Zoe.  It has been one of the longest/ quickest/ trying/ rewarding years of our lives and we wouldn't change a thing.  To look at pictures of Zoe when we left the hospital and to watch her scoot around on her behind and laugh and smile like crazy is unbelievable.  Yes she still has a few things to work on developmentally, but to think that this same smiling happy, happy kid is the same kid that couldn't move or breathe on her own just a year or so ago is awe inspiring.  What keeps us going every day is that Zoe is one of the most with it, alert, engaging children I've ever known and she doesn't know there is anything wrong with her- she's just happy to be here and happy to play and snuggle with mama and papa.  She now weighs 21 lbs. 1 oz and is 30.5 " tall.

Now back to this past month.  Zoe's had a rough time with eating and vomitting  these last few weeks.  We have tried just about everything trying to get her food to stay down better.  We switched her from soy formula to a hypoallegenic formula which seemed to make a bit if a difference for a few weeks and then back to vomitting.  We then tried goat's milk which worked great for a while and then vomitting started again.  We then tried a perscription only formula called Elecare, which is supposedly the most non-allergenic formula on the markety, but it made her vomit more than anyrthing else- between 7-10 times a day.  She was then allergy tested and it came back positive for dairy and peanut, not that she has ever had peanuts.  I also think she has a corn allergy even though it came back negative.  So after all of this I started doing a lot more reseach and decided to try and blend my own real food formulas for Zoe.  Right now she is getting via her g-tube: rice milk, carrots, peas, rice cereal, turkey, agave syrup and canola oil.  We have been meeting with a nutritionist at Children's to come up with a plan that gets her all the nutrients she needs.  She is still vomiting some, but it does seem to be helping.  She is much more energetic even while eating.  Her skin looks a bit better, not in hives all the time anymore.  It is definetly still a work in progress, but hopefully we're getting somewhere.  Besides, it's rather rewarding to be making and be in control of what goes into Zoe.  She has so many chemicals in her, it;s nice to give her some organic food for once.

Zoe had her first pulmonology appointment in three months last friday and they were thrilled.  They thought she looked great, lungs sounded great, developing great, putting on weight at the right speed so they don't need to see her for 6 months.  She will still be getting RSV shots this winter to help keep her healthy.  Zoe, Jason and I have all had our flu shots and H1N1 shots so hopefully we are off to a good start this winter.

We have tried to do some normal family things this past month, go to the aquarium where Zoe tried to lick all the fish, go to her cousin Eva's second b-day party, go to storytime at the library, take Zoe to her first Halloween party (last Halloween she had surgery- a cardiac catheter).  It's been fun, but a really tiring month with all the eating issues, hopefully thst will all turn around these next few weeks.  Keep sending happy thoughts and prayers our way for some good GI vibes for Zoe.  If Zoe has a good day, then we have a good day..... 

Zoe- a year ago today!!  Ready to leave the hospital for the 1st time!!

 

Zoe at the aquarium, loving the fishies!

 

Zoe as the Million Dollar Baby  "MDB" for Halloween

 

 

Back view, not to shabby for a 20 minute costume!



Monday, November 2nd

clock November 2, 2009 20:27 by author Shannin

Can you believe it's been a year tomorrow, the 3rd, since we left Seattle Children's  Hospital with Zoe.  It has been one of the longest/ quickest/ trying/ rewarding years of our lives and we wouldn't change a thing.  To look at pictures of Zoe when we left the hospital and to watch her scoot around on her behind and laugh and smile like crazy is unbelievable.  Yes she still has a few things to work on developmentally, but to think that this same smiling happy, happy kid is the same kid that couldn't move or breathe on her own just a year or so ago is awe inspiring.  What keeps us going every day is that Zoe is one of the most with it, alert, engaging children I've ever known and she doesn't know there is anything wrong with her- she's just happy to be here and happy to play and snuggle with mama and papa.

Now back to this past month.  Zoe's had a rough time with eating and vomitting  these last few weeks.  We have tried just about everything trying to get her food to stay down better.  We switched her from soy formula to a hypoallegenic formula which seemed to make a bit if a difference for a few weeks and then back to vomitting.  We then tried goat's milk which worked great for a while and then vomitting started again.  We then tried a perscription only formula called Elecare, which is supposedly the most non-allergenic formula on the markety, but it made her vomit more than anyrthing else- between 7-10 times a day.  She was then allergy tested and it came back positive for dairy and peanut, not that she has ever had peanuts.  I also think she has a corn allergy even though it came back negative.  So after all of this I started doing a lot more reseach and decided to try and blend my own real food formulas for Zoe.  Right now she is getting via her g-tube: rice milk, carrots, peas, rice cereal, turkey, agave syrup and canola oil.  We have been meeting with a nutritionist at Children's to come up with a plan that gets her all the nutrients she needs.  She is still vomiting some, but it does seem to be helping.  She is much more energetic even while eating.  Her skin looks a bit better, not in hives all the time anymore.  It is definetly still a work in progress, but hopefully we're getting somewhere.  Besides, it's rather rewarding to be making and be in control of what goes into Zoe.  She has so many chemicals in her, it;s nice to give her some organic food for once.

Zoe had her first pulmonology appointment in three months last friday and they were thrilled.  They thought she looked great, lungs sounded great, developing great, putting on weight at the right speed so they don't need to see her for 6 months.  She will still be getting RSV shots this winter to help keep her healthy.  Zoe, Jason and I have all had our flu shots and H1N1 shots so hopefully we are off to a good start this winter.

We have tried to do some normal family things this past month, go to the aquarium where Zoe tried to lick all the fish, go to her cousin Eva's second b-day party, go to storytime at the library, take Zoe to her first Halloween party (last Halloween she had surgery- a cardiac catheter).  It's been fun, but a really tiring month with all the eating issues, hopefully thst will all turn around these next few weeks.  Keep sending happy thoughts and prayers our way for some good GI vibes for Zoe.  If Zoe has a good day, then we have a good day..... 



Monday September 21st

clock September 21, 2009 14:27 by author Shannin

I know it's been forever since I've posted on Zoe's website, but as usual life has been busy, busy, busy.  We had Zoe's big 1 year birthday bash on August 15th.  It was a whirlwind of a party for all involved.  Zoe was a bit out of sorts for a lot of the party since she hadn't napped much the day of and there were so many people there she was a bit overwhelemed.  She had fun being the center of attention as usual and then ended up taking a nap halfway through the party.  We woke her up to do her birthday cake.  She was great at getting the cake smeared everywhere on her excpet getting it in her mouth, but it was fun to watch.  The party was a ladybug theme, so Zoe's was entirely covered in red and black frosting, which let me tell you is not easy to get off of skin!!  It was fantastic to see everyone and Jason and I will remember it forever, even if Zoe won't. 

Zoe had a few weeks in late August, early Sepetember where she was vommitting alot.  Becasue of this she  lost all interest in trying to eat once again.  Because she still has reflux, or GERD, whenever she vomits, it causes a burning sensation, so when this happens over and over she knows that eating might make her do that also and it is like she is scared to try to eat.  We are sort of starting over with the eating thing.  Somedays, she will do OK and try a  few bites and other days nothing.  We are just trying to stay patient and let Zoe do it on her own time.  It has to be the most frusterating thing I have ever dealt with, It's hard to comprehend not wanting to eat anything no matter how good it tastes, especially since Jason and I are such good cooks!  We started her on a new drug called Periactin last week.  This is an appetite stimulant that is oftyen given to anorexia patients.  We are hoping it will make her a bit hungrier and more apt to try stuff.  Jury is still out on it as of now. 

Zoe had her first ECHO in three months on last Thursday the 17th and it went great.  When Zoe was discharged from the hospital the first time back in November her lung pressures were in the 100's- normal are in the 30's.  In June her pressures had dropped into the 90's and as of Thursday theay are in the 70's!!  We obviously still have a ways to go, but it appears the flolan in doing it's job.  Her dosage for flolan continues to go up slowly every week adb she seems to tolerate it well.  It does casue her some vomitting sometimes, but i guess that is the price we pay.  Her heart still looks enlarged a bit ont he right side, but it doesn't appear to have gotten any worse.  The other good news is that two of the small holes she had in her heart that were allowing blood to flow the wrong way seem to be closing up because of the lessening pressures!!  Her cardiologist is very excited by Zoe's progress but wants to continue to hit her as hard as we can with the drugs with the hope for further improvment.

Becasue it is supposed to be a rough flu season again  this winter, we will have to go on a bit of a lockdown again.  Probably not as strict as last year, but we still need to be very careful and keep Zoe away from anyone that could be sick or around sick people.  She will be getting her RSV shots again along with a flu shot and the H1N1  (swine flu) vaccine. 

As of last week Zoe weighs 20 pounds 6 ounces which puts her in the 30th percentile for weight and the 50th percentile for height.  Also, her hair is growing in like crazy and it's curly like mine!!  She's babbling like crazy lately and starting to make some da-da sounds, even though she isn't referencing Jason since he goes by Papa.  Zoe will also be startign to recieve some physicla thereapy and speech therapy through Washington State's birth to 3 program to try and catch her up a bit on her gross motor skills since she still isn't crawling,although she can get herself around just fine by scooting, rolling and spinning.

Please continue to send prayers and happy thoughts Zoe's way to keep her healthy and to encourage her to learn to eat on her own and of course for patience on Jason's and my part!!

The following are some fun pictures from the past month or so that we love.

 

Zoe's birthday party ensemble-  a ladybug tutu!!

 

the cakes, my sister-in-law made the little ladybug cake for Zoe

 

The mess!!

 

At the kitsap county fair withmy mom, she went on the merry-go-round 4 times- she LOVED it !!

 

Seahawk Sunday with Papa,   TOUCHDOWN!

 



Wednesday August 12th

clock August 12, 2009 22:00 by author Shannin

HAPPY BIRTHDAY TO ZOE!!!!!!!!!!!

We can't believe it's been a year.  It has been the fastest and yet slowest year of our lives.  I feel like I have aged 10 years but I wouldn't change a thing and neither would Jason.  She is the most amazing baby.  Every day there is something new and exciting she learns.  Right now it is how to make fish faces and goofy snorting laughs.  I remember when 9 minutes old was a big deal, and then 9 days, 9 weeks, 9 months and here we are at a year old.  Zoe is a little confused by all the birthday hoopla right now.  I think she is wondering what the weird song is everyone keeps singing to her, but she's loving the paper that presents come it- tastes good!! 

Jason and I have been getting caught off guard with our emotions latlely. I have hardly cried this whole past year, mainly because there wasn't time to break down and Zoe needed us to be strong.  We have been living in the moment for so long, not looking back too much and not looking too far into the future.  Suddenly here we are, Zoe's a year old and doing so well.  I am having a hard time talking about her latlely without getting totally choked up.  I think the whole experience and what the three of us have been through is finally starting to sink in.  I know that probably seems strange to just be dealing with emotions now, but I think it was how we needed to cope with the past year.  Things could have gone so different and with all your prayers and happy thoughts here we are celebrating a big first year birthday with Zoe.  Everyone that meets her is astounded by the depth of knowledge and wisdom in her eyes, I think she also knows how blessed she is to be here and she LOVES life.  Nothing makes her smile more than seeing Nana and Bapa or Papa coming home from work.

Tonight we celebrated her birthday with our good friends John and Steph Viele.  They are busy on the day of Zoe's big party so we went over to their house tonight and Zoe got her first birthday candle. (Actually she had half a cake with candles when she was 6 months old at my parents.)  Zoe loved the paper of course and all the attention, and evern managed to get some chocolate pie in her mouth with some whipped cream. Yummy!

We are so excited for her big celebration on Saturday, there could be no better reason to celebrate-- Zoe's here!!  We are looking forward to seeing everyone who has kept us going the last year and has said endless prayers for Zoe.  We even have some of her nurses from Portland coming up for the big day-- they certainly helped me through some tough times. 

Just some basic updates, As of August 4th, she weighed 19 pounds 6 ounces, so I am assuming she weighs close to 19 lbs. 11 oz now.  She had her neurodevelopmental test last week and tested great on her fine motor skills and her cognitive ability.  She is a bit behind on her gross motor skills which I could have told them, so she will be starting some physical therapy for that.  Feeds are hit or miss.  Sometime she does great and will eat several spoon fulls, other times she wants nothign to do with food, so we are definitley no farther ahead than we were a few weeks ago, but I'm sure we'll get there.  Zoe does get her own ladybug cake for her birthday so we'll see what she does with it, whether she digs in and tastes it or just plays with it.

Thank you so much for all the support the past year, we couldn't do it without you all!!

On a side note, Zoe has a little friend who also had a CDH.  His mom and I have spent a good amount of time chatting about everything we/ he babies have gone through.  He just got released yesterday from Childrens Hospital and is now home at about 2.5 months old. Please send lots of prayers and love his direction-  He's doing amazing but has a long road ahead of him and speaking from experience his Mama will be kept busy so send some love her way also.

Thank you, Thank you, Thank you to all of you for all the love!!!!!

HAPPY BIRTHDAY ZOE!!!!!!!!!!

 

 

 



Sunday August 9th

clock August 12, 2009 21:34 by author Shannin

This weekend I did an art show with my purses for the first time in months and Zoe got to hang out with me.  She did great she was totally entertained by all the people and entertained all the people.  She took naps in her travel crib and played the rest of the  time.  She also discovered she loves to eat grass!!  It was great for me to get out and be an artist again for a while and fun to have Zoe outside for that long.  My dad was also in the art show, he makes garden art out of recycled metals.  He made the bug that Zoe is sitting on below with her cousins, Savannah and Jordyn. 

 

 

 And just for fun, here is an article that appeared in the Bainbridge Review last week about my Dad and I and some about Zoe.

  

Two Bainbridge generations with a clear (re)purpose: The Stroms show handmade treasures at 2009 Summer Studio Tour

Shannin Strom-Henry and Dick Strom with Zoe. See Shannin, Dick and their hand-crafted creations Aug. 7-9 at Cecil Ross Studio, as part of the 2009 Summer Studio Tour.  - Brad Camp
Shannin Strom-Henry and Dick Strom with Zoe. See Shannin, Dick and their hand-crafted creations Aug. 7-9 at Cecil Ross Studio, as part of the 2009 Summer Studio Tour.
Brad Camp

By LINDSAY LATIMORE
Bainbridge Island Review Reporter

Aug 07 2009, 3:41 PM · UPDATED

 

Those Stroms. They love to scrounge for scraps.

"It’s funny how Dad and I totally do the same thing," Shannin Strom-Henry said. “Just in a different medium.”

Shannin’s preferred vehicle for creativity is vintage textiles; Dick Strom’s is, well, the vehicle, or any object that consisted of metal in its first incarnation.

Visitors to this weekend’s 2009 Bainbridge Summer Studio Tour can catch them both, as Red Buckle Shoes and BapaTom’s Metalworks share space with other artists and craftspeople at Cecil Ross Studio. It’s one of seven venues on this year’s circuit.

The Strom family has deep island roots; Dick’s father purchased a 20-acre piece of property on West Port Madison Road in the 1940s, built a pink farmhouse, and raised his family there.

Dick’s proclivity for metal started when he was 8 or 9, he said, when a neighbor asked for his help on a project.

With his wife, Bobbie, Dick parlayed his skills into the creation of the long-standing island business, Modern Collision Rebuild. He and his brothers each purchased five acres of land from their parents, and Dick and Bobbie constructed a new house in which to raise their own family.

Between business and a growing brood, he didn’t have time to work on anything besides cars and the house.

But with semi-retirement, not to mention several garages brimming with sheet metal and old parts, came an impulse to re-purpose metal into a form that was more lighthearted. BapaTom’s Metalworks emerged from there.

Dick’s first piece was a gate built for Bobbie. At the top is a rose with leaves made of shovel heads; pitchfork tines are arranged throughout to form the body of the gate, and there’s an old wheel on top serving as a trellis.

Later pieces included goldfish, salmon and seahorses, all of which have horseshoes for scales. There are also crabs; centipedes with old shoe lasts for feet and mole traps for mouths; and flowers on re-bar stakes, with centers made from anything that looks like a a center, including folded sheet metal and old sprinkler heads.

He also builds fire pits from segments of old tanks that began life underwater as platforms for mothballed subs.

“I always figure I’m giving this old metal another 50 years,” he said.

Garden gates remain Dick’s favorite; that first rose gate provides entry to the plot that has sat at the front of the property for 55 years. He suspects the volunteer rhubarb that grows there is a distant relative of the crop that was originally planted.

Shannin shares her father’s appreciation for the property’s history, and remembers an idyllic childhood on the farm – including the steer that she and her brothers had to avoid as they cut through the field every day on the way to the bus stop.

When she got older, though, she craved city energy and flew the proverbial coop. She obtained a master’s degree in costume design, working for the LA Opera for four years as an assistant designer and then moving back to the area to work with Seattle Repertory Theatre.

Shannin sewed for herself, and at some point along the way someone noticed a purse that she’d made from vintage fabric. A commission ensued, and Shannin began constructing her line of one-of-a-kind bags in various shapes and sizes, from handbags to large totes, all of which blended sturdy, new fabric with delicate vintage scraps in inventive ways.

Shannin met her husband, Jason Henry, on a trip back to Bainbridge from Los Angeles. They’d been in the same class at Bainbridge High School but not known each other; turned out he lived in L.A., too.

And despite thinking that “never in a million years” would they move back, here they are. They bought the pink farmhouse and are living in a purple studio they built adjacent to it as they refurbish the homestead.

“Next to Mom and Dad,” Dick said. “That’s really sad.”

Dick and Shannin can joke about it because neither sees it that way. The preciousness of family has become especially apparent to the Stroms since the birth of Shannin and Jason’s 1-year-old daughter, Zoe, who was born with a condition called congenital diaphragmatic hernia. She’s a happy baby who’s developing beautifully but has ongoing medical needs. Shannin views her daughter’s proximity to family as a gift.

Besides, Shannin said she did everything she needed to do career-wise in her 20s. Now that she has Zoe, she’s settled into a workable routine of making bags, being a mom and doing costume design for Bainbridge Performing Arts.

Inspired by Zoe’s tiny feet, and the intrinsic cuteness of baby clothes, Shannin has also created a new line of felt baby booties – hence, Red Buckle Shoes. These, too, incorporate old pieces and old stories, but for a new generation.

History is what Dick likes about his work, too. Although it’s not always obvious from looking at his garden art, he prefers to incorporate elements that all have a story, like his first fish. Its backbone is made from an old Model-T crank shaft he dug up 30 years ago. There’s also the centipede’s eyebrows, made from old chain links salvaged from the Wyckoff property here on the island.

When something has a story, he said, he can better envision its future.

“Whoa, I know where this is going,” he’ll say about an object.

“And,” he said, looking at Shannin, “I think you feel that way, too.”

 

***



Thursday July 16th

clock July 16, 2009 21:13 by author Shannin

We've had two days of eating three meals each day!!  Zoe's doing great with her feeds.  She is still reaching for the spoon and not spitting anything out.  We are probably averaging a few tablespoons of food at each meal.  Today consisted of cereal, soy yogurt, sweet potatoes and bananas-  yummy!!  Hopefully she sticks with all this.  It could be a whole new world if she figure sout this eating thing.

 Zoe also got to go to a church picnic tonight with a gazillion other kids and she did great.  She only cried when she saw two of her uncles- go figure.  She got to play with another baby tonight who is about a month and a half younger than her, Lily.  Lily is the daughter of Jordan, who I used to babysit when I was in highschool.  The picture below is Zoe with my mom (Nana) and Lily with her grandma, Sindy Piehl, who I have known my whole life and is a great friend of the family and actually a distant relative on my dad's side. To make things even more confusing, Sindy's daughter, Carrie, used to babysit me when I was a kid.   Crazy small world- this Bainbridge Island!

 



About us, the Strom-Henry clan

We are the parents of Zoe Holtz Henry;  Jason Henry and Shannin Strom-Henry.  We live on Bainbridge Island, WA.  where we both grew up, moved away from and then moved back to.  Zoe will be growing up on the same property that I grew up on, except she will be living in her great grandparents cute pink farmhouse.  She will someday be going to the same elementary school that her grandpa (Bapa Toms) went to, I went to, and her great grandma Strom used to teach at.  Zoe will be lucky enough to be raised much like Jason and I were, right next door to both sets of grandparents and lots and lots of cousins, aunts and uncles and with lots of access to fun outdoor places to make forts in and ride bikes.  This is why Jason and I moved back to Bainbridge; to give Zoe the chance to be a normal child and not grow up too fast.  But before we get there, we're going to get through all of this, so here's the story to date...

 

You can email me any questions or comments at shanninstrom@gmail.com

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