First day of school!
Oh, what an exciting time. We had an amazing summer and I am so grateful for it. School started this month for both Noah and Zoe. There has been lots of transitions as Noah has started Kindergarten and Zoe finally started preschool. A lot of people have asked me if I’m nervous having her in preschool and I’m really not (ask me again in the middle of flu season). I’m excited for her and joyful because she’s well enough to go.
Noah going off to Kindergarten is another story…….I had to start talking with another mom just to keep myself from crying. Real school. Noah is in Real School. He’s also not too thrilled with it but things are starting to work themselves out and his teacher is great.
I am overwhelmed by where Zoe’s at right now. I recently had an evaluation done for her through the school district to see where she’s at developmentally and she passed with flying colors. I never dreamed she’d go to school without any support services. She also did great at her GI, pulmonology and cardiology appointments this month. Smooth sailing in all areas. She also was able to do a lung function test everyone said she was too young to know how to do. And yet she did it perfectly and her lung function is perfect.
Ok. Here are some pictures…..
Something new
I have waited a REALLY long time to write a post like this. Zoe has done something new…she fought off an infection! That’s right. She caught a cold, got an earache, revved up her temp to 101.5 and then fought it off! Oh joy! I can’t tell you how excited I am! Can you tell by my excessive use of exclamation points!? I like to think of this as a vision of what is to come this winter.
The brother
In all the excitement about Zoe’s third anniversary of her transplant I forgot something. I forgot it was not the happiest time for Noah to remember. Starting back in July, Noah suddenly developed a nasty case of separation anxiety. How weird, I thought. After all, he’s five and freaking out even when left with his closest friend. It was so strange and it was persisting. Finally, one evening I told the right friend (so thankful God put this woman in my life). This friend is one I met at the hospital, with children who also had a sibling in the hospital. However, they spent 3 months straight in the ICU and didn’t get to bring their baby home. When I told her what was happening she promptly explained that every year, her oldest daughter goes through separation anxiety when the calendar swings around to the time when her youngest sister was in the hospital for 3 months and mommy was gone. Of course. When I worked in foster care I saw this all the time. Kids, even ones too young to tell time or read a calendar, have an uncanny ability to just KNOW when the anniversary of a traumatic event is coming up. Last year Noah asked me if I remembered when I died and Daddy stayed home with him. So I guess since he equates the experience with Mommy dying that he just might experience issues around the anniversary.
When I tried to talk with him about his memories from that time he pretended not to remember it at all. For those of you who don’t know my son, he is the kid that can remember things from a house he lived in before the age of 2, pulls out memories that I can barely remember and NEVER forgets anything. The longer we talked the more information he volunteered but he was obviously uncomfortable. So next year (say, around June), someone PLEASE remind me to prepare Noah for the anniversary and prepare myself for how he reacts.
What a race
Yesterday was the 10K/5K run to raise money for Children’s Hospital. Thanks to all of you who came out and ran or donated towards the cause. The website for donation is still up if anyone is still interested.
It was a perfect day for a race. The weather was beautiful, the temperature just right and Paul and I took both kids in the jogging stroller.
We took the race pretty leisurely with our friend Jen and both kids even got out to run for awhile.
Noah and Paul ran in the 1/4 mile kids’ race. We were so impressed; he ran, without stopping the entire way!
There was lots of fun after the race with the bouncy house, balloon swordfighting along with snacks provided by local merchants.
Thanks again everyone!
Three years today
Three years ago today Zoe was recovering from heart transplant surgery. There’s not a good deal I remember about that day since we were up the entire night before her surgery. I remember listening to a lot of Death Cab for Cutie, my sister-in-law taking us to breakfast but being unable to stay in my skin so far from where she was lying open on a table. Combining sleep deprivation with the fear and hope you feel as you wait those 6 hours wipes most of the memories away.
I do remember today. Zoe and I have had a rough day. Rough. She’s three and likes to throw things when angry; I’m 30 and apparently like to lose my cool when a 3 year old throws things. As my husband aptly put it, “what a great way to spend her anniversary”. And although I wish the morning had gone better it still is a great way to spend her anniversary because we’re together. This afternoon we’ll bake cupcakes together and watch Curious George together and somewhere along the way another toy will get thrown and we’ll deal with it together. It’s not unlike her life as a whole; lots of rough patches but lots of joy as well.
Last week I sang Zoe “You Are My Sunshine” for the first time and she smiled her heart splitting grin, the one that crinkles up her eyes, and asked me, “are you singing about me?”. I got to tell her that she’s one of my sunshine’s.
“You are my sunshine, my only sunshine.
You make me happy when skies are gray.
You’ll never know dear how much I love you.
Please don’t take my sunshine away.
I’m so grateful for today. For having her in our family and for three years of life.
Look how far she’s come
Once a year, Children’s Hospital raises money for it’s uncompensated care fund. The uncompensated care fund is used to provide free medical care for children whose families either have no insurance coverage or for those families whose medical expenses exceed what the program finds to be reasonable based on income level. For the past three years Zoe has been the recipient of the uncompensated care fund. They funded her initial heart surgery, they funded her transplant, every hospital stay she has ever had plus every medication she’s had to be on, plus every lab they have ever run, plus every blood transfusion, plus, plus, plus. Without this fund I truly don’t know what our life would look like. Zoe (and our family) draw significantly from this pool every year and I’d like to give back a little this year. Actually, I’d like to give back a lot. The organization running the fundraising campaign has made it very easy to raise money, track the contributions and allow people to give on a secure website. The fundraising is mostly being done via a race held on August 15th (yes, this post is horribly belated) at the Redhook Ale Brewery in Woodinville. There is a 10K race, a 5K race, a 5K walk and a Kid’s Dash. The entry fee is $30 if you register online between now and August 12th or $35 on the day of the race. Information regarding the race can be found here If you would like to participate in the race please register under the team Paul and I have created (Team Zoe). During the registration process it will ask you if you want to be part of a team and all you have to do is type in Team Zoe. You’ll notice on the websites for the event they are telling the story of a little girl named Zoe but this is not our Zoe.
If you don’t wish to actually walk or run the event you can also give by going to our fundraising page
Please give to this fund. As a general rule I don’t ask for money on this blog but once a year I do and wlll continue to do so in the future. This program is so important to our family and to so many other families in a time when the state legislature has cut millions of dollars to the hospital. Imagine needing this fund; imagine knowing that if you pay your child’s medical expenses you’ll lose your house; imagine your child being denied a transplant because you don’t have insurance or adequate insurance; imagine being told you must raise $1 million before your child can be put on the transplant list. These things happen every day, these things will happen more without this fund.
Here’s a slideshow to show how far she’s come
How to make popsicles for a child with dysphagia
I tracked down the awesome nutritionist in the Pulmonology clinic to discuss summer issues such as what to do with a three year old who isn’t supposed to eat popsicles. She gave me the go ahead to make my own using thickener. Here’s my disclaimer…….Zoe’s docs say this is okay but if you’re reading this and your child has dysphagia please ask your doc before making these. Okay. It’s really very simple. Start with four unfrozen Otter Pops (1 oz. regular size, not Costco size)
Four Bevara sealing clips (paper clips also work)
1 Simply Thick packet
A container with lid to shake the contents
A funnel
One tall container to stand popsicles upright in freezer. I use an empty popsicle mold.
Step 1: Empty contents of Otter Pops into shaker cup. Make sure you cut off as little of the wrapper as possible as you snip the end off the left side.
Step 2: Add Simply Thick and shake
Step 3: Place funnel in empty Otter Pop wrapper and pore solution until it reaches the top of the “O”.
Step 4: Place Bevara sealing clip on top and place upright in popsicle tray.
Step 5: Place in freezer…..Done! Four ounces of sugary goodness with a side of normalacy.
You can also mix the thickener with fruit juices and freeze in popsicle molds. For fudge pops buy pudding cups and place in popsicle molds since fudgcicles are considered a thin liquid as well.
Life without a camera
I know…..so silly but I haven’t wanted to post anything because I have no working camera right now. Zoe turned 3 last week and although everyone else present has pictures of it I do not yet. She had such a wonderful birthday party and even the weather cooperated giving us a hot evening for a pool party and bbq. She was very excited that her friends were coming and I was so grateful for her good health and the ability to have so many friends and family over.
We are enjoying our summer very much with a trip to Spokane, swimming lessons and very few doctors appointments. She’s been struggling with some skin issues but I think that’s going to be her thing. I know one family whose child always seems to have ear infections and another whose child struggles with retaining too much liquid and Zoe’s seems to gravitate towards yeast and other skin infections. I am SUPER grateful that she is not more suppressed because even with as low as her medication level is, she’s just so sensitive to yeast and the bacteria we all come in contact with everyday. And on the bright side, I now know how to identify impetigo (strep skin infection) which will probably come in handy at some point.
In the GI department her cramping has stopped so we’ll live with the diarrhea and forgo the sedated procedures for now. Yah!
At some point my camera will be shipped back to me from the repair shop and I’ll post some summer pics. We’re coming up on her 3 year anniversary which is unbelievable to me. It’s another one of those big milestones that we happily walk across…..
Quick update
Echo good
EKG good
Labs good
No labs for 3 weeks…..great!
GI doc is giving her another month with daily Benefiber to see if the cramping diarrhea stops (boy is she going to appreciate this website when she’s older). If it doesn’t stop then off we go for a colonoscopy and an endoscopy. The good news is that he’ll know what’s going on if he does this procedure. The bad news is obvious.
She has red blood cells!
Zoe’s labs show red blood cells! Her hematocrit is above 30 and the measure of new red blood cells in her system is nice and high. Oh joy! Maybe no more transfusions! The ironic part is that her neutrophil count dropped again (the white blood cells that fight infection). I’ll find out next week if she needs injections again or if her body is just having fun messing with everyone.
We got hit with the plague this week in various forms. On Tuesday both kids woke up with fevers but Noah had cold symptoms as well. Both fevers broke by the next day. The funny part was Noah was comatose on the couch with fatigue and Zoe ran around the whole day saying, “I not sick”. On Wednesday I had the fatigue and nausea and couldn’t imagine being up and running around. I guess the little things don’t bother her the same way. She puked last night on the way home from labs but was up tearing around the house this morning. I just love the irony. Noah’s fever is back today and he has a terrible cough and the beginnings of an ear infection. Zoe, with the suppressed immune system, and low neutrophil count is FINE.
Quote of the week: I’m just putting potato bugs in mom’s shoes!-Noah
