Another month; more memories. Thankfully, Izzy made it through
the entire summer only needing 2 shots of antibiotics (1 day, but 2
shots to kill a nasty ear infection). And the only time she saw her
cardiologist was at the Heroes Hurrah following the Wish-A-Mile 300
mile bike ride for Make-A-Wish Michigan. She may not make 6 months
between cardiology visits after a trip to the ER yesterday, but I'm
getting ahead of myself. I like to take these posts in
chronological order as this is a record for me as much as it is an
update for all of you.
Our last post ended with Izzy having bronchitis, but still permitted to attend the Heroes Hurrah. It was a wonderful day, but cold and rainy. It didn't matter though because the kids had a blast! When we checked in, they gave Izzy a hero's cape and medal. They also gave her one of the bracelets with her named embroidered in it. All of the riders on her team wore one during the ride to give them an extra push to continue. Izzy felt like a HERO when the medal was placed over her head!
Shortly thereafter, they had all of the wish heroes (former wish kids) gather together for a photograph to thank the riders. As Izzy waited for the other kids, we asked her to show us her hero pose:
Darth Vadar was there! Phin loves, loves, loves Darth Vadar.
There was face painting.
That was Izzy with the wonderful volunteer who painted her face.
Of course, Izzy cheered on the bikers as they crossed the finish line!
And she was able to put a medal on one of her team's riders!(Unfortunately, it got to be too late and Izzy got to be too exhausted (she did have bronchitis), so we had to leave before the rest of the team came in to get their medals. We're very sorry we missed you, Carol!)
Finally, Izzy did get to see her cardiologist. That was the moment Izzy was waiting for!
It was most definitely a GOOD day!
That brought us into August and lots of parties and several missing teeth! (Phin lost the teeth, not Izzy.)
First one tooth, then the other!
We had lots of fun in August. Here is a smattering of pictures starting with Izzy as a soldier.
Nurse Izzy ready to conduct a procedure.
And for those of you who think Izzy only ever smiles in pictures:
Wearing her super hero hat.
Here is Izzy giving me love. She declared this morning that she is "Love Izzy". How cute is that!
Here she is wearing her new favorite color.
Don't worry. She'll still be covered in pink and purple as well. She just added turquoise to her wardrobe!
The most important part of August was Phineas's Return of the
Jedi 7th Birthday Party!
This fantastic cake was donated by a local baker through Icing Smiles! Not only did it look amazing, it tasted great!
Icing Smiles donates cakes to kids with life threatening illnesses and their siblings. If you've been following us a while, you'll remember the fabulous butterfly cake that was donated for Izzy's 4th birthday.
The evening was filled with fun, light saber battles, and ended with s'mores around a campfire.
The fun continued right through Phin's actual birthday.
We have also spent the month taking care of business. Lots of doctors appointments per the norm. Visits from the hospice nurse and social worker. One of our favorite activities this month was making hearts with our family's hand prints to show the invisible strings that keep us together.
Yes, there are five hand prints. The heart on the right has two Izzy prints because that is what she wanted. The book "The Invisible String" has helped the kids in quelling some of their fears.
Our last post ended with Izzy having bronchitis, but still permitted to attend the Heroes Hurrah. It was a wonderful day, but cold and rainy. It didn't matter though because the kids had a blast! When we checked in, they gave Izzy a hero's cape and medal. They also gave her one of the bracelets with her named embroidered in it. All of the riders on her team wore one during the ride to give them an extra push to continue. Izzy felt like a HERO when the medal was placed over her head!
Shortly thereafter, they had all of the wish heroes (former wish kids) gather together for a photograph to thank the riders. As Izzy waited for the other kids, we asked her to show us her hero pose:
Darth Vadar was there! Phin loves, loves, loves Darth Vadar.
There was face painting.
That was Izzy with the wonderful volunteer who painted her face.
Of course, Izzy cheered on the bikers as they crossed the finish line!
And she was able to put a medal on one of her team's riders!(Unfortunately, it got to be too late and Izzy got to be too exhausted (she did have bronchitis), so we had to leave before the rest of the team came in to get their medals. We're very sorry we missed you, Carol!)
Finally, Izzy did get to see her cardiologist. That was the moment Izzy was waiting for!
It was most definitely a GOOD day!
That brought us into August and lots of parties and several missing teeth! (Phin lost the teeth, not Izzy.)
First one tooth, then the other!
We had lots of fun in August. Here is a smattering of pictures starting with Izzy as a soldier.
Nurse Izzy ready to conduct a procedure.
And for those of you who think Izzy only ever smiles in pictures:
Wearing her super hero hat.
Here is Izzy giving me love. She declared this morning that she is "Love Izzy". How cute is that!
Here she is wearing her new favorite color.
Don't worry. She'll still be covered in pink and purple as well. She just added turquoise to her wardrobe!
This fantastic cake was donated by a local baker through Icing Smiles! Not only did it look amazing, it tasted great!
Icing Smiles donates cakes to kids with life threatening illnesses and their siblings. If you've been following us a while, you'll remember the fabulous butterfly cake that was donated for Izzy's 4th birthday.
The evening was filled with fun, light saber battles, and ended with s'mores around a campfire.
The fun continued right through Phin's actual birthday.
We have also spent the month taking care of business. Lots of doctors appointments per the norm. Visits from the hospice nurse and social worker. One of our favorite activities this month was making hearts with our family's hand prints to show the invisible strings that keep us together.
Yes, there are five hand prints. The heart on the right has two Izzy prints because that is what she wanted. The book "The Invisible String" has helped the kids in quelling some of their fears.
As I mentioned above, Izzy had a nasty ear infection.
Unfortunately, the patcher "hid" the infection from the ENT. Even
though we KNEW it was there, they didn't believe us. A week after
we first took her in to the doc for an ear infection, it had gotten
so bad that she was literally screaming in pain. So, for 3 Fridays
in a row, Izzy saw ear doctors! Yet, it was the primary care doctor
who actually cleared up the infection. (LOVE HER!)
Izzy continues to receive her weekly doses of hizentra (immunoglobulin infusions). After a year and a half of being poked by small needles weekly, she has finally learned to stay calm and not fight us. For the last couple of weeks, she has realized that it doesn't hurt nearly as much if she cooperates completely. I think she is actually growing up!
This last week, was vacation with cousins! Izzy and Phin had been dreaming of vacation all summer. It was a great week. My family rented a house in Good Hart within walking distance to a beach on Lake Michigan and with plenty of room for the kids to run around and have fun.
She's frowning because she's in jail and I was taking her picture and not rescuing her!
There was a lot of down time as well.
Can you tell she was a monster baby in that picture? Below was 10 minutes later; she had grown into the Princess of Dark. (They were playing Super Mario and Phin was Bowser and Izzy his baby.)
Izzy drew her and I having fun together.
We were also within walking distance of ice cream!
It was a great trip. Relaxing and fun. We did have a couple of days where Izzy overdid the activity and had to wear oxygen and stop playing all together. But it wasn't anything too alarming. Yesterday, however, half an hour into our trip home, Izzy vomited (we were at the gas station, so the car was stopped). After cleaning her up, we got on our way again. 15 minutes later, she vomited again. When she was done and we were on the road again, she started complaining of pain in her upper right arm. She was sweaty while the rest of us were not. She also said she was dizzy and was having pain in upper abdomen (not quite the chest). Needless to say, I was concerned of a heart attack. The nearest hospital was 30 miles away, so we drove. 15 minutes into the drive, Izzy returned to normal. The pain left, her color returned, and she said she felt fine. We still went to the ER.
After ordering blood work, x-rays, urine analysis, and EKG, and comparing the EKG to Izzy's last EKG, the ER doc did not see anything that looked like a heart attack. The damage seemed consistent with the chronic damage that has already been noted. He couldn't be sure though because of how damaged Izzy's heart and lungs already were, so we have to contact Dr. Cutler and follow up (which means we probably won't make it 6 months between visits as planned). Izzy NEVER makes it to her actual appointment. The ER doc's best guess was tachycardia.
Izzy continues to receive her weekly doses of hizentra (immunoglobulin infusions). After a year and a half of being poked by small needles weekly, she has finally learned to stay calm and not fight us. For the last couple of weeks, she has realized that it doesn't hurt nearly as much if she cooperates completely. I think she is actually growing up!
This last week, was vacation with cousins! Izzy and Phin had been dreaming of vacation all summer. It was a great week. My family rented a house in Good Hart within walking distance to a beach on Lake Michigan and with plenty of room for the kids to run around and have fun.
She's frowning because she's in jail and I was taking her picture and not rescuing her!
There was a lot of down time as well.
Can you tell she was a monster baby in that picture? Below was 10 minutes later; she had grown into the Princess of Dark. (They were playing Super Mario and Phin was Bowser and Izzy his baby.)
Izzy drew her and I having fun together.
We were also within walking distance of ice cream!
It was a great trip. Relaxing and fun. We did have a couple of days where Izzy overdid the activity and had to wear oxygen and stop playing all together. But it wasn't anything too alarming. Yesterday, however, half an hour into our trip home, Izzy vomited (we were at the gas station, so the car was stopped). After cleaning her up, we got on our way again. 15 minutes later, she vomited again. When she was done and we were on the road again, she started complaining of pain in her upper right arm. She was sweaty while the rest of us were not. She also said she was dizzy and was having pain in upper abdomen (not quite the chest). Needless to say, I was concerned of a heart attack. The nearest hospital was 30 miles away, so we drove. 15 minutes into the drive, Izzy returned to normal. The pain left, her color returned, and she said she felt fine. We still went to the ER.
After ordering blood work, x-rays, urine analysis, and EKG, and comparing the EKG to Izzy's last EKG, the ER doc did not see anything that looked like a heart attack. The damage seemed consistent with the chronic damage that has already been noted. He couldn't be sure though because of how damaged Izzy's heart and lungs already were, so we have to contact Dr. Cutler and follow up (which means we probably won't make it 6 months between visits as planned). Izzy NEVER makes it to her actual appointment. The ER doc's best guess was tachycardia.
The most important thing for Izzy though, is
KINDERGARTEN! She has been literally counting down
the days.
In two short days, Izzy will be a kindergartener. I never thought this day could come, yet here it is!
Mel
In two short days, Izzy will be a kindergartener. I never thought this day could come, yet here it is!
Mel
* * * * *
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