They say "To learn what a person is most afraid of losing, look at what they photograph." Over the last month, I've taken hundreds of photographs of my babies; captured tons of memories. That has been our life: soaking up love and laughs every chance we get.
That's not to say things have been easy. Izzy's anxiety level
and anger have reached new heights, which make it very difficult
for living, let alone making happy memories. But we persevere and
with help from Izzy's counselor, we have new tools to help ease the
fears and anger that are all part of learning you are not expected
to live very long.
Another coping mechanism Izzy has developed is playing doctor. She has been doing this off and on for a while now, but over the last month, taking care of sick babies and pets has become Izzy's full time job when she is not at school. (Below is Izzy giving oxygen to her baby with a light--stethoscope--on her head to better see while doing the procedure.)
Izzy's babies and pets are constantly "very sick" and in need of care. They need to spend the night in the hospital often. And Izzy gets frustrated at times because she does not know how to fix her babies. All of them have heart disease. They all take medicine. Many of them need oxygen. And everybody, including Dale and I, must get hearing tests.
Yes, that is Izzy conducting a hearing test. For some reason, even though she is the one giving it, she needs to wear the headphones. And they are plugged into a game of "Trouble" because it makes noise for the subject to hear.
Another coping mechanism Izzy has developed is playing doctor. She has been doing this off and on for a while now, but over the last month, taking care of sick babies and pets has become Izzy's full time job when she is not at school. (Below is Izzy giving oxygen to her baby with a light--stethoscope--on her head to better see while doing the procedure.)
Izzy's babies and pets are constantly "very sick" and in need of care. They need to spend the night in the hospital often. And Izzy gets frustrated at times because she does not know how to fix her babies. All of them have heart disease. They all take medicine. Many of them need oxygen. And everybody, including Dale and I, must get hearing tests.
Yes, that is Izzy conducting a hearing test. For some reason, even though she is the one giving it, she needs to wear the headphones. And they are plugged into a game of "Trouble" because it makes noise for the subject to hear.
Speaking of hearing tests, Izzy had her post-op follow up and
she is hearing borderline normal. Yup, you heard it right "NORMAL!"
We knew she was hearing better with the patcher, but normal is such
a blessing. Here is Izzy at the ear doctor's office.
Izzy also saw her immunologist/pulmonologist last week. He was as happy as he could be with Izzy. He didn't change a thing. If fact, we spent a good chuck of time talking about Phin at the appointment. Last fall, at Phin's 6-year well visit, his doc did a full immune panel just to check (both Izzy and I have weak immune systems). Phin's blood work came back showing his immune system was weak. We've repeated the labs twice more over the last 9 months with no change. The immunologist wants Phin to go again in a couple of weeks. If Phin's immune system remains low (which is likely), Phin will be monitored closely, he is not permitted live vaccines, and he will go for genetic testing to see if he is missing a piece of chromosome 22q11.2, like Izzy. It does not appear that he will need hizentra infusions. He has not had the same recurring bacterial infections that Izzy has. And Phin has been through a cardiac workup previously, so the main concern with the 22q testing is potential for learning disabilities and psychiatric illness later in life; not to mention the possibility of passing 22q onto his own children someday.
Speaking of 22q, we participated in 22q at the Zoo in May. It is an international event held at zoos across the globe, where people raise awareness of 22q Deletion Syndrome. The kids had so much fun!
Other than that, we continue to meet with the hospice nurse every two weeks, the social worker and spiritual counselor, then the kids both see a counselor/therapist each week (well, one kid one week, the next kid the next week). Makes for a busy life, especially when you throw in end of school year events. Below are some photographs from the events Izzy has participated in over the last month
The biggest event of all happened last week and this week. Izzy is officially graduating from preschool. Here are some pictures from her end of year show. She had to be beeUtiful as you can tell.
Here are some before and after shots for you to see how Izzy has changed this year. You be the judge (first day of preschool on the left, this morning on the right).
Izzy already has a shirt for her elementary school. She is so ready to be a kindergartner (although she says she is scared as of two weeks ago when they did a kindergarten assessment.)
Finally, I'll end with more photographs from this month.
Swinging outside the elementary school.
Goofing around in the ice cream parlor!
Indoor playground!
Screen time!
Goofing around with her new favorite toy, Ralph from "Wreck it Ralph"--Izzy's favorite movie these days.
She asked me to take this photograph because she was "styling!"
Finally, fun in the water this past Sunday.
Izzy also saw her immunologist/pulmonologist last week. He was as happy as he could be with Izzy. He didn't change a thing. If fact, we spent a good chuck of time talking about Phin at the appointment. Last fall, at Phin's 6-year well visit, his doc did a full immune panel just to check (both Izzy and I have weak immune systems). Phin's blood work came back showing his immune system was weak. We've repeated the labs twice more over the last 9 months with no change. The immunologist wants Phin to go again in a couple of weeks. If Phin's immune system remains low (which is likely), Phin will be monitored closely, he is not permitted live vaccines, and he will go for genetic testing to see if he is missing a piece of chromosome 22q11.2, like Izzy. It does not appear that he will need hizentra infusions. He has not had the same recurring bacterial infections that Izzy has. And Phin has been through a cardiac workup previously, so the main concern with the 22q testing is potential for learning disabilities and psychiatric illness later in life; not to mention the possibility of passing 22q onto his own children someday.
Speaking of 22q, we participated in 22q at the Zoo in May. It is an international event held at zoos across the globe, where people raise awareness of 22q Deletion Syndrome. The kids had so much fun!
Other than that, we continue to meet with the hospice nurse every two weeks, the social worker and spiritual counselor, then the kids both see a counselor/therapist each week (well, one kid one week, the next kid the next week). Makes for a busy life, especially when you throw in end of school year events. Below are some photographs from the events Izzy has participated in over the last month
Izzy went to her first bridal
shower and had to dress pretty.
Wearing her super hero cape!
Memorial Day at Ma and Papa's house. Izzy helped garden!
Wearing her super hero cape!
Memorial Day at Ma and Papa's house. Izzy helped garden!
The biggest event of all happened last week and this week. Izzy is officially graduating from preschool. Here are some pictures from her end of year show. She had to be beeUtiful as you can tell.
Here are some before and after shots for you to see how Izzy has changed this year. You be the judge (first day of preschool on the left, this morning on the right).
Izzy already has a shirt for her elementary school. She is so ready to be a kindergartner (although she says she is scared as of two weeks ago when they did a kindergarten assessment.)
Finally, I'll end with more photographs from this month.
Swinging outside the elementary school.
Goofing around in the ice cream parlor!
Indoor playground!
Screen time!
Goofing around with her new favorite toy, Ralph from "Wreck it Ralph"--Izzy's favorite movie these days.
She asked me to take this photograph because she was "styling!"
Finally, fun in the water this past Sunday.
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