11-13-2014 Anna's 25th Infusion

This week it was infusion party Thursday instead of Wednesday.  With last week's infusion, we upped Anna's flow rate from F275 to F600.  She did great with that.  But with the fast flow, I decided we needed "bigger" needles.  We went from 6mm 27 gage needles to 9mm 26 gage needles.  Anna also had been feeling not herself the past couple of weeks (though she hadn't been sick exactly), so we decided to also up her dose from 4 grams in 20mL of fluid to 6 grams in 30mL of fluid.   She did awesome with the new amount and wasn't swollen or anything afterwards (I think probably because of the new needle size). 

Two of the Mom's on my Zebra board (kids with PID are called "Zebras") made an amazing video to raise awareness.  My 3 zebras are in it as well.  They did an outstanding job.  Please take a minute (or 8) to watch the video.

https://www.youtube.com/watch?v=qT8ecqF63Ck

11-5-14 Anna's 24th Infusion

Warning: this post will be FULL of pictures. 

Anna had her 24th infusion this week.  She does remarkably well with them, and she has been staying healthy.  She had a little bit of sinus crud/cold, which in the past would always end up draining into her lungs and turning into bronchitis or pneumonia.  This was her first infection since starting on her infusions, and she got over it on her own!  She had a few doses of cough and cold meds, but her lungs stayed clear and it cleared up on it's own!

Anna's and Zach's log books where I keep track of their infusions.

Here are some random (mostly) infusion pictures from this month.

October was busy.  It was the end of fall soccer, Anna's 4th birthday, and we took a trip to Colorado while the kids were out of school for a few days for conferences. 

We had Anna's 4th birthday party on Saturday the 18th of October.  We had a "Frozen" theme, and she had a great time.  My sister made the cakes (one gluten and one gluten free), and my Mom got Anna the Elsa dress (which made her change her mind about the Halloween Costume she had chosen).  Jason's Mom made Anna her Elsa hat and the Olaf bag, which are so cute!

We went to Colorado the end of October for a fast trip.  I took my 5 year old nephew Robby with me as well.  We left early Thursday morning, in time to get to my Aunt's house before the Broncos game started, and came home Sunday.

Friday, after spending the morning with my Grandma, we went out to Jason's cousin's family's house.  It was great to visit, and the kids had a ball riding horses and ATVS, and collecting eggs and picking tomatoes.

I decided to take fall pictures while we were in Colorado this year because the weather was gorgeous and the colors were amazing still at the end of October.  So Saturday morning, we went up to Golden to take pictures.

And finally, after we got home, Jason and I took Anna to the Arboretum to take her 4 year old pictures.  I loved doing her 3 year old pictures last year at Powell Gardens, and this was a lot of fun too.

10-1-14 Anna's 19th Infusion

Yesterday, Anna had her 19th infusion.  She is fighting a bit of a sinus infection, but no fever or cough, and her lungs sound clear. This is the first infection she has gotten since we started her on subQ IG therapy in May!  That is HUGE!

She handles the infusions really well (though she tends to play it up a little more when her daddy is here since he will baby her a bit :)  She knows that on Wednesdays, it is her infusion day.  We call it an "Infusion Party" since Zach also infuses on Wednesdays, and Sarah does too (though hers are bi-weekly instead of weekly).

She usually plays games or plays on her tablet while she is infusing

 

 



This is immediately following

 

And pictures of her siblings doing theirs yesterday too

 



8-20-2014 Anna's 13th infusion and doctor appointment update

Yesterday was Anna's 13th infusion.  In fact, we had a triple infusion party!  I lined up all of the kiddo's infusions so they would be on the same day.  Sarah gets hers every other week, but the other two get them every week.  Wednesdays work best since that is generally the one night a week we have free.  And it is a 2 1/2 to 3 hour process from the time we have to pre-medicate until the infusions are finished.  Zach and Anna get theirs weekly, so it is only every other week, so it is only every other week that all 3 of them get them at the same time.  (Believe it or not, the TV isn't even on.  They are just zoned out.)

Anna did well with this infusion, but she ended up crashing hard about 6pm, right in the middle of it.  She woke up a bit when I took her needles out.  And she woke up a little while we put a pullup on her (she hasn't been wearing them, but she was so tired I was worried she would wet herself. She didn't...she was still dry this morning!).  Other than that, she slept right through until 7am.  She didn't even eat dinner.  She went to school today and is doing great.

Monday, Anna and Sarah both had a follow up appointment with the nurse practitioner (who we love!) at the allergy, asthma and immunology office.  She doesn't usually get to have follow ups with her because she is sick so often that she is always in there.  She has not been in since May, and has not needed any medication since then (not even her asthma meds or an antibiotic).  She is too little to do the pulmonary function test,  but her lungs were totally clear without meds!

We are so thankful Anna is doing so well, and that we found something that is keeping her healthy!

8-14-14 Anna's 12th infusion and first day of school

 

 Yesterday afternoon, Anna had her first day of preschool for the year.  She actually just went and played while the parents had a meeting.  Her teacher seems really nice and Anna is so excited to really start on Monday!

This is a picture of Anna with her teacher.

And Anna before school

Anna with her siblings.  Joshua is in 8th grade, Zachary is in 6th, and Sarah is in 3rd.

After school, it was time for Anna's 12th infusion.  As I was getting ready to put the needles in, she said "Mom!  I don't want to be big!  I just want to be little." Then she said "ow, ow, ow, ow".  Once I put the needle in she said "that didn't even hurt."  What a goofy girl.  She got up and moved around quite a bit during it and has been doing great since. She didn't crash like she usually does, and she wasn't cranky last night.  I'm so glad this has made such a difference for her.

8-6-14 Update on Anna

Anna had her 11th infusion today and did great!  I takes only about an hour and 45 minutes now, and she usually crashes halfway through due to the Benadryl.  Her next one will be next Wednesday. 

First thing this morning, I received a call from the nurse practitioner at the immunologist's office.  We had Anna's blood drawn Monday.  Before starting infusions, Anna's strep-pneumo titers were pretty much non-existent.  They want them to be above 1.8.  Now they are in the 11-13 range.  We just got the girls' labwork back and it looks awesome!  Anna's last IGG before starting subQ was 500-ish. I know that the subQ can skew the labwork, but both girls were in a trough (meaning they were due for their next infusion, so it is closer to seeing how they are doing on it than if we did it immediately fol...lowing an infusion). Anyway, hers this week was 1300+!!   Anna has not been sick since she started in May, so her dose is clearly correct!

We are so thankful to have such a great team working with us to keep the kids healthy.  We appreciate all of the prayers and support.

8-4-14 Update on Anna

Anna has had 10 infusions and is due for her 11th on Wednesday.  She does so incredibly well with them.  She doesn't make a sound when we do them, and she is up and running as soon as they are done!  She hasn't been sick since we started them in May, which leads us to believe that she is at her therapeutic dose.  I have taken her off all of her asthma meds, and she hasn't needed anything other than the Hizentra since we started this May 23.  That is absolutely amazing!

Anna had her blood drawn today for the first time since she started the infusions.  I am curious to see where her levels are now. We draw them right before she is due for her next infusion so she is in a trough and it should give us a better idea of what her levels are doing (more so than if she got her blood drawn immediately following an infusion).  She was so big and sat still, even though she cried a bit while they drew her blood.  Anna has also grown several inches and gained 8 pounds since starting this in May!

Anna also had an eye doctor appointment today.  In February, she was far-sighted, and she also had an astigmatism.  The eye doctor wanted to check her in 6 months to make sure things aren't getting worse.  We received good news today!  She could see 20/20, she was closer to having "normal" vision (not being near or far sighted), and her astigmatism went from .5 to .25!  The doctor is confident that she will return to normal vision on her own.  She will go back for her "normal" eye exam in February.

Anna is excited for preschool to start next week!  She has missed going to school this summer.  She took swimming lessons for two weeks the middle of July.  It was just a very basic preschool class.  The following weekend, we went to visit Jason's parents, and Anna LOVED swimming in their pool!  She was even jumping off their diving rock and swimming the majority of the way across the pool.  What a big girl!  But, when I told her to take a quick breath when her head is above water (she is able to get her head above water herself), she said "I don't need to!  I have gills!"  What a clown. :)

7-5-2014 Update on Anna

I am way behind on this blog for Anna.  Jason and I renewed our vows in the beginning of June, and then we were on a trip for 9 days, so I am just starting to get back to normal!  (It was all totally amazing!)

Anna has had 6 infusions so far.  She did incredibly well with the first two.  The next two, she fought us on, and Daddy had to hold her down while I put the needles in, and then she was fine.  The 5th one, she was a rock star again.  And this last one, Jason had to hold her down again.  We will do her next infusion on Tuesday (we are pushing them a day each time to get it to Wednesday so that at least every other week, she will be on the same schedule as her sister, and because once school starts, that will be our least busy day of the week.

The good news is that since starting these infusions, Anna has not gotten sick.  At all.  It may seem like that isn't very long, but you have to understand that we have not been able to keep her well prior to this.  It is such an answer to prayer that her little body is handling this so well, and that it is making such a huge difference for her!  We are so thankful!

Anna was a flower girl in our vow renewal ceremony, and mostly just didn't want to have pictures taken at all.  She just wanted to terrorize.  But it was fun.  I am sharing a few pictures from that weekend.