It has been five months since I updated. So much has happened.
We celebrated heart month, Izzy turned 7, Phineas got a puppy. It
has been a whirlwind. Izzy has been relatively well on the health
front. We did freak out when measles was going around, but were
finally able to get Phin the measles vaccine (his immunoglobulins
were finally high enough and Izzy is finally safe enough on
Hizentra to be around people who get live vaccines). Izzy still
can't get live vaccines herself, but she is much safer now that her
brother can be fully vaccinated.
Tummy issues have been our biggest hurdle still. Izzy's new meds have helped, but Izzy hasn't really been eating. She is still super tiny for a 7 year old (33.5 pounds with all her clothes on). She's only grown about 1/8 of an inch over the last year. She just looks more sickly these days (at least to me).
This week has been hard. Izzy started having a new stomach pain. It is in a different location and much worse than the other pain. She has basically been out of school all week. We'd take her there and within half an hour, she was in too much pain to stay. Our best guess at a culprit is food. Fairly predictably, within 30 minutes of eating something (usually very little of something), Izzy is in pain. She had a full work up at her primary care doctor on Wednesday, but nothing was discovered. The doc guessed that it could be scar tissue from a past GI surgery causing pain. We did the one suggestion she had and that turned out horrific because it caused Izzy to be more dehydrated than normal, causing severe leg cramps in the night and no sleep, but lots of screaming.
Thankfully, Izzy saw her GI doc this morning. He is perplexed, but wondering if Izzy is having spasms in other parts of her gut, so he started her on a new med that she will take before each meal. Hopefully, that will allow her to eat and drink and feel better. She has just been in misery this week. The new med hasn't worked yet, but it may take a couple of days. Any thoughts or well wishes you can send our girl would be appreciated. She needs so much right now.
I'll end per the norm with some pics from the last couple of months.
Second, we are in the process of helping put together the Southeast Michigan Congenital Heart Walk. Team Izzy is waiting for members to join our team. The walk will be in Troy this year at Boulan Park, so we are hoping for a big turn out. Follow the link for Team Izzy! If you have a business and would like to sponsor the Walk, please message me as we are in the process right now of seeking donations and sponsorships.
Thank you all for continuing on this journey with us,
Mel
Tummy issues have been our biggest hurdle still. Izzy's new meds have helped, but Izzy hasn't really been eating. She is still super tiny for a 7 year old (33.5 pounds with all her clothes on). She's only grown about 1/8 of an inch over the last year. She just looks more sickly these days (at least to me).
This week has been hard. Izzy started having a new stomach pain. It is in a different location and much worse than the other pain. She has basically been out of school all week. We'd take her there and within half an hour, she was in too much pain to stay. Our best guess at a culprit is food. Fairly predictably, within 30 minutes of eating something (usually very little of something), Izzy is in pain. She had a full work up at her primary care doctor on Wednesday, but nothing was discovered. The doc guessed that it could be scar tissue from a past GI surgery causing pain. We did the one suggestion she had and that turned out horrific because it caused Izzy to be more dehydrated than normal, causing severe leg cramps in the night and no sleep, but lots of screaming.
Thankfully, Izzy saw her GI doc this morning. He is perplexed, but wondering if Izzy is having spasms in other parts of her gut, so he started her on a new med that she will take before each meal. Hopefully, that will allow her to eat and drink and feel better. She has just been in misery this week. The new med hasn't worked yet, but it may take a couple of days. Any thoughts or well wishes you can send our girl would be appreciated. She needs so much right now.
I'll end per the norm with some pics from the last couple of months.
Heart Month!
A day at Build-A-Bear!
A picture with her new favorite book: "Izzy the Ice Cream Fairy!"
Wacky Day!
7th birtday fun! No big party this year, just a trip to a hotel with indoor waterpark with cousins!
Making a board game.
Once again, on Easter this year, the kind people at Faith@Work covered our front lawn in eggs filled with fun things. The kids were so eggcited!
First time riding bikes this year. I think this picture looks like an ad the Make A Wish, Wish A Mile! Izzy is going to be a hero again this year at the event for the Heroes Hurrah! She is so excited.
Izzy prepared for us to get the dog by making sign telling the dog that it couldn't go in Izzy's room. (For some reason, the dog didn't listen--probably because she is a baby and cannot read.)
Meet Goldy, Phin's golden retriever puppy! She is the sweetest little girl.
Earlier this week, between lots of pain, Izzy made it to her first grade musical performance. She was a star! Later this spring, she will be performing in the school's talent show as well.
I would be remiss if I didn't mention two things we are working
on right now. First, we are preparing for the Second Annual Izzy's
Ice Cream Challenge and Ice Cream Social! We will be raising money
by eating ice cream this summer. All proceeds will go to the
Michigan Chapter of the Children's Heart Foundation. For more
information, follow us on Facebook: http://www.facebook.com/IceCreamForIzzy or
send me a message.A day at Build-A-Bear!
A picture with her new favorite book: "Izzy the Ice Cream Fairy!"
Wacky Day!
7th birtday fun! No big party this year, just a trip to a hotel with indoor waterpark with cousins!
Making a board game.
Once again, on Easter this year, the kind people at Faith@Work covered our front lawn in eggs filled with fun things. The kids were so eggcited!
First time riding bikes this year. I think this picture looks like an ad the Make A Wish, Wish A Mile! Izzy is going to be a hero again this year at the event for the Heroes Hurrah! She is so excited.
Izzy prepared for us to get the dog by making sign telling the dog that it couldn't go in Izzy's room. (For some reason, the dog didn't listen--probably because she is a baby and cannot read.)
Meet Goldy, Phin's golden retriever puppy! She is the sweetest little girl.
Earlier this week, between lots of pain, Izzy made it to her first grade musical performance. She was a star! Later this spring, she will be performing in the school's talent show as well.
Second, we are in the process of helping put together the Southeast Michigan Congenital Heart Walk. Team Izzy is waiting for members to join our team. The walk will be in Troy this year at Boulan Park, so we are hoping for a big turn out. Follow the link for Team Izzy! If you have a business and would like to sponsor the Walk, please message me as we are in the process right now of seeking donations and sponsorships.
Thank you all for continuing on this journey with us,
Mel
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by June Spriggs
by Kelly Curtis
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