Just an FYI... And Sarah's 10th infusion

In talking with my husband and some other people, I have decided to address this publicly.

I intentionally made this an open blog so that people can easily read it.  I have received nothing but positive feedback from friends/family and strangers alike.  People are either grateful that they can keep up with Sarah, that they can learn about something they aren't familiar with, that their kid can know that they aren't the only one going through this, or to gain information so they can know how to treat their child or what to expect from this type of treatment.

Last week, I received the first negative comment, and it was from someone I don't know.  I do not know how they found my blog and they wrote under an "anonymous" profile just made that day.  They asked why I would post half-clothed photos of my child on the internet, and how will she feel when she is older and her friends see them.  This person also said that they have done IG therapy and do not "wear it on their sleeve as a badge of courage" and that they do not use it to identify them.

So, let me make a few things clear...

I started the blog about our experience with CVID (Common Variable Immunodeficiency) and subQ IG (the name of the treatment) for several reasons. 

 

1. I want to create more awareness for immune deficiencies. Even many people in the medical community are uneducated when it comes to this, and definitely a lot of the general public don't know much about this.  I certainly didn't before we started dealing with it.

2.  I want to give people hope who maybe have a kid who is sick all of the time or are looking for answers.
 

3.  I want to let others know about our experiences if they are going through something similar or thinking about doing IG therapy.

4. I want to keep family and friends updated on progress. 

5. I that to have a journal of sorts so we can see progress ourselves.

I DID NOT start the blog to exploit my child, to gain sympathy, or to have her labeled.  In every picture I post of Sarah, she has pants and a shirt on, and you can see her abdomen.  You see less than you would if she were in a 2 piece swim suit for sure.  I do not use it to define her, nor does Sarah allow it to define her.  This treatment is part of her life (and all of our lives) by taking 2 hours every other week to do her infusion, and causing the soreness and swelling she has for several days afterwards.  Sarah is little girl who deals with way more than a whole lot more than most almost 8 year olds deal with in her life.  But who she REALLY is is a little girl who loves singing, playing soccer, drawing, playing games, and spending time with her friends and family.  What defines Sarah is her love for Jesus, her compassion for others, her willingness to jump up and help anyone with anything, and her sweet spirit.

Sarah knows I take these pictures and keep the blog. She is on board because she wants to help other people if she can.  Many times we are put in someone's life because we have had an experience that they are going through and need support.  Even at 7, Sarah gets this.

 

So what upsets me is that this person felt like they could judge my heart or my motives in keeping this blog.  Those of you who know me, know my heart and motives are pure.  If you do not agree with what I have to say or do not like it, then don't read it.  It is as simple as that.    And this is all the attention I am going to give to this...

 

 

So, on to the next thing because I am going to just keep doing what I believe is right!

 

Sarah is finally over whatever crud she was fighting, and is doing very well.  At her progress exam with the eye doctor, it did in fact show that her eyes are coming along quite nicely and responding well to the vision therapy.

 

Sarah had her 10th infusion yesterday evening.  In talking to the nurse before her last order, we decided to go from the 6mm/24 gauge needle we used in the last infusion to a 9mm/24 gauge needle.  I was a little worried about that because 9mm looks so much longer than 6, even though it sounds like a small difference.  The needles went in effortlessly and painlessly for her, and the infusion went very quickly this time!  We were done in about an hour and 40 minutes.

 

This was during the infusion (the syringe with her medicine is in her pump.  The small syringe came with a monkey from Hizentra (the manufacturer of the medicine) so she could "practice" giving it an infusion to make her more comfortable.).

 

 

 

This was immediately following the infusion.  Remember, she is getting 10g of medication in 50mL of fluid in her stomach, which is a lot for someone her size.

 

 

 



And these were maybe an hour later.

 

 

After her infusions, she is quite worn out, but then the following day, she has more energy and feels better.  Today the swelling is down even more, and she feels better, though she is still a little sore.

 

This week has been spring break, and we have had a good week!  Monday, Zach and Anna were still feeling pretty crummy, so we didn't really do much.  Tuesday was Zachary's birthday, so we went out to lunch and then the kids all had dentist appointments.  After Sarah's visual therapy, she had her first soccer practice of the season. Wednesday morning, we went to Crown Center with some friends and played at the Wizard of Oz Exhibit and had lunch and ice cream.  Wednesday evening, our family all came over to celebrate Zachary's birthday and we had a nice party.  Today was pretty low key.  Tomorrow, Sarah, Zach and I get to go watch Sporting KC (our Major League Soccer Team) practice and meet the players.  Saturday, Sarah, Zach, Jason and I (and Sarah's friend) all get to go to the Sporting KC Game as part of the Victory Project.  It was started last year, and this year is expanded to help children  who are facing "health challenges".  It is an honor, and we are excited to be part of it!  I'm sure we will have pictures to post and stories to tell.  It also comes at a good time because Sarah has been feeling just...well...bummed about everything she has been dealing with.  And this is a good pick-me-up.

 

Sarah's next infusion will be on Wednesday, April 2.  Thank you for all of your prayers, and support as we travel this road.

3-11-14 Updates on Sarah's Speech Therapy, Visual Therapy, and Illness

Sarah goes to speech once a week.  The main issues she has had are the /sh/ /ch/ and /j/ sounds.  She has what they call a "lateral" lisp, and when making these sounds, she does not hold her tongue correctly, and the air comes out the sides.  She also has issues with the /r/ sound, but that is developmental.  When we first talked, her speech therapist told me that it is very difficult to correct, and that some day it will probably just click for her.  But, she also explained that there are steps in the process.  She would work first on saying just the sound correctly, then she would use it in words, then in reading aloud, and then in normal conversation.  She couldn't tell me for sure how long she thought this might take.

Last week, after speech, Sarah got in the van all excited because her speech teacher was so excited at how well she was doing.  She even had her reading aloud.  Her teacher was so impressed that she told Sarah that she might "be kicked out of speech" in the next few weeks.  

Sarah's speech therapist sent me this email:

I couldn’t be more impressed with Miss Sarah.  She has really started to produce /sh/, /ch/ and /j/ sounds so well in the last 2-3 weeks.  She has done so great that we are even practicing while reading aloud.  We went to Mrs. Main’s last Friday and read aloud for her and Sarah got all of her sounds right.  I usually don’t have kids that pick sounds up this quickly and then self-monitor themselves while reading and talking.  She can either practice at home by doing worksheets I send home, or reading aloud very slowly so she can get the sounds right when they come up in the text or practice them in conversation by talking slowing during a certain time at night.  So for practice in conversation, tell her that you are going to practice talking with your /sh/, /ch/, /j/ sounds during dinner or in the car driving home from school or at bedtime.  Just ask her questions about her day or whatever and remind her to slow down so she can anticipate the sounds and self-monitor her speech.  She is doing great.  If we fix these sounds we may wait until later 3^rd grade to work on the /r/.  It is still developmental at this point.

Tuesdays, Sarah has visual therapy.  Five days a week, she has homework to do at home, but Tuesdays are when we actually go and meet with the therapist and track her progess, as well as when we get new activities to work on the following week.

Today, her therapist (whose name is Joy) was so excited to see her progress.  She said that Sarah's diagnosis is one of the hardest to treat, but that she loves it when we come in because she is seeing so much progress.  She didn't anticipate things to go this well.  She expected Sarah to be "stuck" working on the same thing for more than a week.  Each time we have gone in, though, she has had to give her all new work.

Her tracking is SO much better.  She doesn't get lost when reading lines of letters or words anymore (Which, incidentally, has also improved her reading, and she has changed reading groups at school.  She has to read small letters and numbers with "flippers".  She flips between a positive and a negative.  She started at -.5 and +.5.  The ones she got today are -2.5 and +2.5.  Even at her last appointment, she would struggle for a couple of days with the new flippers.  She flew through her stuff with her new ones today.  We also noticed that her "bad" eye is starting to even up with her good eye.  For example, one of the things she has to do with her flippers is read small random letters as we point to them.  Last time, she had 17 with her "bad eye" in 1 minute and 24 with her "good eye" in one minute.  The goal is for her to have 24 with both.  But today, she has 20 with her bad eye, and 21 with her good eye.  Joy was very pleased and said she would rather see that than have her good eye so much better.  Her coordination is also getting better.  And her eyes are getting better at working together when not patched.

Next Monday, Sarah has a progress visit with the eye doctor.  Joy says that she thinks at that point that Sarah will probably start patching each eye for 30 minutes a day (right now she is just patching her good eye for 2 hours a day).  Joy also said she is so excited and cannot wait to see what the doctor thinks next week.  At first, when the doctor estimated Sarah needing 30 visits, Joy thought that wouldn't be enough.  Today she said we might be done between 20 and 25 visits.  So that is excellent.

As for Sarah's illness that she has still been fighting, she still is not 100%.  But, she is doing somewhat better.  So we will just keep waiting for now. 

I also talked to the nurse when we ordered Sarah's next infusion today.  In talking to her (because Sarah has had some bruising from the last infusion, but it isn't even all at the infusion sites), we have decided to try the longer needles with the next infusion.  So we will see how that goes.

We appreciate everyone's prayers and support.

3-5-14 Sarah's 9th Infusion

Sarah has still not gotten over whatever she has been fighting for months.  In talking to the doctor last week, we opted to stop the antibiotics (since it wasn't helping anyway), start some prednisone, up the use of the nasal spray, give more albuterol, and see how she did.  I have been feeling frustrated because she still runs an occasional low grade temp, and is still sick A LOT.  However, I was thinking about it, and I don't think she has really missed school since we started the infusions.  Before, she was missing a lot of school, and it was usually 3+ days at a time, and running fevers of 103 or more for many many days at a time.  She is definitely showing improvement.  I also spoke with the doctor yesterday, and we started the prednisone back up and check in again tomorrow.  We have an absolutely amazing doctor's office who are always willing to answer questions and are so supportive and helpful to us.  I am so grateful for Denice (the nurse practitioner we usually see) and Dr Kanarek, and the team they work with at the office.

Before this infusion, I called and talked to the home health company about the issues we were having with her last infusion.  I told them about the tubing that had worked well for us, and that I wanted something by that manufacturer.  The nurse I was speaking to looked it up, and that manufacturer did not make 3 site tubing in the exact size needles we were using.  Our old needles were 27 gauge (which is how big around they are ~ the larger the number, the smaller the circumference) and 6mm long.  Our options with that manufacturer and 3 sites were 27 gauge needles that were 9mm long (so same size around but 3mm longer) or 24 gauge needles that were 6mm long (so bigger around, but same length).  He sent me two sets of each so I could decide what I wanted to do. 

Initially, I my thought was that the needles maybe needed to go in deeper to stay in her better.  But, yesterday I had a moment of panic and asked some of my nursing friends what they would suggest.  It was 50/50, but part of the thought process was that if she didn't have much fat anyway, the longer needles may get into the muscle.  And, that since we upped her dose, maybe the problem was that the medicine was thicker and leaking out of it because of that rather than the needles not being in her.  I didn't necessarily think this was the case since we went to the 2 site set, which was the exact same size needles and it worked just fine when we were having problems last time.  But, I decided to try the 24 gauge (bigger around), 6mm (same length) needle set. 

I LOVE the tubing made by this particular manufacturer!  I hear an audible "pop" when I put the needles in her skin, and I just know they are in right.  I also moved them closer to the center of her abdomen and made less space between each site.  Initially I had been told we needed at least an inch between sites.  I was told recently that half an inch is totally fine.  And this infusion went well!

This is Sarah watching Frozen while getting her infusion

 

 

This infusion took exactly 2 hours, which was great.  Because of the time it takes for the medicine and numbing cream to kick in, we didn't start the infusion until 5pm.  We had an Ash Wednesday service to attend at 7.  We opted to take Sarah (infusion and all), which she was not happy about.  She thought people would laugh at her or ask her about it.  No one did, and she was finished right when church was starting, so I just took her out, took out the tubing, and we went back in.

This was immediately after her infusion.  Remember she is now getting 10g of medicine in 50ml of fluid.  That is a lot of liquid for a little girl.

 

 

 

This was about an hour and a half after the infusion was finished

 



And this was this morning, or about 12.5 hours after the infusion was finished.

She says she isn't too sore this morning, which is good.  Her next infusion will be Wednesday, March 19.