I can't believe it has been a month and a half since I posted last. Things have been going relatively well. Izzy has had another ear infection. Her patch that "fixed" the hole in her ear drum earlier this summer is now gone and her hearing is worse than ever. We have to repeat ourselves quite frequently. The next step will hopefully be a hearing aid because I will not be putting her through another procedure under anesthesia that will only help things for a very short while.
Behavior-wise, Izzy has improved leaps and bounds and is happy! Izzy has been a joy to be around and we are so thankful.
We also found an answer to her constant stomach pain! Her GI doc had her start taking two prevacid before dinner, rather than one before breakfast and one before dinner. With that simple change, that problem is almost gone entirely. Izzy still has tummy aches, but not like she was in November.
Izzy saw the immunologist who is happy that her immune system is doing well with her infusions. Phineas, on the other hand, has tested with extremely low immune system for over a year now. He may need to be started on immunoglobulin infusions as well. And he is being tested for 22q Deletion Syndrome. All I can do is sigh at that.
Unfortunately, Izzy has started to complain of chest pains on a regular basis and her swollen belly is now a constant. Fortunately, her liver does not seem to be enlarged, even if her function is showing some decrease. This is simply a sign that her heart failure continues to increase (or is it decrease?). No matter how it is said, Izzy's symptoms continue to slowly worsen. She still smiles though.
And the night terrors go through cycles. We are now giving Izzy valium every night at bed time and if things get bad, a second dose around midnight. The valium really does help.
Best of all, as been the activity. Izzy gets tired pretty easily, but she has had a wonderful time the last month and a half. I'll show you.
The Tuesday before Thanksgiving,
Dale and Izzy had a Daddy-Daughter event with the Daiseys at Dave
& Busters.
Thanksgiving was spent at my parents' house at Izzy's request. She decided where we would celebrate and what we would eat. She also decorated. This is Izzy eating dessert that day. Forget the pie. Izzy only wanted whipped cream!
The next day, Dale helped my sister and brother-in-law move a piano AND Izzy got to play it!
Then early in December, we headed up north to ride the Huckleberry Railroad and see the fabulous Christmas lights! The kids loved everything about it. Thank you, Fonck family!!
Izzy did see several doctors, but you know, she always smiles!
On my birthday (Mel), we went back to my parents' house for dinner. And the kids got to play with their cousins in the snow. Yay!!
These were taken at Izzy's last dance class before Christmas. She was spoiled there! Unfortunately, it was a Thursday evening, after the school party and sing-a-long and Izzy was only able to dance for about 3 minutes before she was too tired to continue.
To interrupt the happy photos, I had to share this one.
That photo was taken right after Izzy gave me a fight about taking her medicines (not normal). She decided one day without them would be okay. And when I reminded her that the medicines kept her alive, she responded "But, Mommy, I have to die someday." And such is life in our house.
Fast forward back to happy and Christmas Eve! Here is Phin dressed up as a camel to go to church with my parents. (I think he may be the cutest camel ever!)
And here is Izzy in her new Christmas jammies with her baby, Cute, in Cute's new Christmas jammies.
Here are the kids writing notes to Santa with their cookies.
Izzy insisted that Santa take all of the cookies and Phin wanted him to take the entire bag of carrots for the reindeer.
And Christmas morning stockings!
Then upstairs for gifts family gifts!
Our lady wanted babies and baby stuff for Christmas. I guess she got it!
Thanksgiving was spent at my parents' house at Izzy's request. She decided where we would celebrate and what we would eat. She also decorated. This is Izzy eating dessert that day. Forget the pie. Izzy only wanted whipped cream!
The next day, Dale helped my sister and brother-in-law move a piano AND Izzy got to play it!
Then early in December, we headed up north to ride the Huckleberry Railroad and see the fabulous Christmas lights! The kids loved everything about it. Thank you, Fonck family!!
Izzy did see several doctors, but you know, she always smiles!
On my birthday (Mel), we went back to my parents' house for dinner. And the kids got to play with their cousins in the snow. Yay!!
These were taken at Izzy's last dance class before Christmas. She was spoiled there! Unfortunately, it was a Thursday evening, after the school party and sing-a-long and Izzy was only able to dance for about 3 minutes before she was too tired to continue.
To interrupt the happy photos, I had to share this one.
That photo was taken right after Izzy gave me a fight about taking her medicines (not normal). She decided one day without them would be okay. And when I reminded her that the medicines kept her alive, she responded "But, Mommy, I have to die someday." And such is life in our house.
Fast forward back to happy and Christmas Eve! Here is Phin dressed up as a camel to go to church with my parents. (I think he may be the cutest camel ever!)
And here is Izzy in her new Christmas jammies with her baby, Cute, in Cute's new Christmas jammies.
Here are the kids writing notes to Santa with their cookies.
Izzy insisted that Santa take all of the cookies and Phin wanted him to take the entire bag of carrots for the reindeer.
And Christmas morning stockings!
Then upstairs for gifts family gifts!
Our lady wanted babies and baby stuff for Christmas. I guess she got it!
And did we mention that Izzy wants
to be queen? She loves to dress in the princess dresses, wear
crowns, etc, but she also wants to be in charge! My mom made that
queenly cloak for her.
Last Saturday, we were having Dale's family over for Christmas, so Izzy had to wear a big dress all day. This is her getting ready to go grocery shopping with me. My queen.
We got to spend time with cousins from California!
Then Sunday, the cousins from 20 minutes down the road finally got rid of the flu and came over! Izzy got the piece she "needed" for her babies--the crib!
Phinney got to be Harry Potter! He is constantly walking around the house with his hand, saying spells.
And that has been our holidays. Today, we're taking it easy as Izzy had a rough night.
Last Saturday, we were having Dale's family over for Christmas, so Izzy had to wear a big dress all day. This is her getting ready to go grocery shopping with me. My queen.
We got to spend time with cousins from California!
Then Sunday, the cousins from 20 minutes down the road finally got rid of the flu and came over! Izzy got the piece she "needed" for her babies--the crib!
Phinney got to be Harry Potter! He is constantly walking around the house with his hand, saying spells.
And that has been our holidays. Today, we're taking it easy as Izzy had a rough night.
It's hard to say that we are glad 2013 is ending. This year has brought us such sad news, but it was a year spent with our Izzy. We don't know how many more of these we will have, so it is bittersweet to see it end. We remain hopeful though that 2014 keeps Izzy well enough to continue to enjoy life.
Happy New Year!
Mel, Dale, Phin, & Izzy
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