11-17-2014 Vision Update

This morning, Sarah had her 3 month follow up after her completion of visual therapy.  This visit was to make sure everything "held" and her eyes were not reverting back to the way they were before.  (Sarah had been throwing up yesterday afternoon and even had a little fever last night, so I was worried that we would have to move the appointment.  Her eye doctor is only in that office Monday and half a day Tuesday, so it potentially could be difficult to get back into her if we needed to move the appointment. Fortunately she hasn't gotten sick since 6pm last night and seems to be totally fine today.  Glad this bug was short-lived!)

If you missed the back-story on Sarah's eyes and visual therapy road, you can find it here:
http://sarahsjourneytowellness.blogspot.com/2014/08/8-14-14-visual-therapy-graduation-and.html

After doing all of her exams, the eye doctor informed us that Sarah's eyes are doing great.  She is solidly seeing 20/20 with correction (which she didn't even come close in the beginning, and even though she did at our last exam in August, she could just fluidly call out the letters today instead of having to work harder to make them out), her recoveries are great, her eyes are working together, and she doesn't anticipate us having any issues at all in the future.  She has now officially been graduated out of the visual therapy program and released to go back to our other eye doctor.  She technically is due next month for her eye exam, but because we have gone through all of this, she suggested waiting 6 months as we already know her eyes are doing great and we have the correct prescription (her RX didn't change from last December to now in terms of what she needs for lenses).  Sarah will be glad to get contacts again.  She ran out of them, and I was waiting to see if she needed a different RX before ordering another box.

11-13-14 Sarah's 27th Infusion

This week we had infusion party Thursday as Wednesday was crazy and they just didn't get done.  The infusions are still going well, and Sarah is still staying healthy.  I am so thankful these treatments are working and keeping my kiddos healthy.

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

10-29-14 Sarah's 26th Infusion

October was a busy month.  It was the end of fall soccer (so Sarah is done until March), we celebrated Anna's 4th birthday, and the kids were out of school for conferences so we took a few days to go to Denver and visit my Grandma who is 91 and the rest of my family out there.

I will share pictures from these at the end.  Sarah had her 26th infusion on Wednesday, October 29th.  The doctor's office has decided to start providing the kids' infusion supplies instead of going through the home health company that we were using.  There was a delay in getting things switched over, so her dose on the 29th was only 8 grams instead of the 12 grams she usually receives.  I am still waiting to see if she will be okay by next Wednesday when she gets her next infusion because of the lower dose.   So far, so good.  Since she was only getting 8 grams last week, we clamped off one of the needle sites so she got it in two sites instead of 3.

While we were in Colorado, the kids got to ride horses and ATVs with my husband's cousin's family.  They had so much fun.  I took my 5 year old nephew with us too.

All of us ready to go

 

 

At the Colorado Boarder

 



Riding Horses

And the ATV

Infusion Pics from this month

We took fall pictures in Colorado this year for a change of scenery

Halloween pictures.  My Mom couldn't find an Anna dress for Sarah in her size, so she made her a wonderful costume, and Sarah loved it.

 

 

 

Sarah and her best friend Jackson

10-1-14 Sarah's 24th Infusion

So Sarah has her first infection since we got to the 12g dose in April.  First infection in 6 months.  I don't know if you can fathom this, but previously, these 6 months would have equaled at least 6 rounds of antibiotics, probably at least 2 rounds of prednisone, advair twice a day, and albuterol/breathing treatments regularly.  Not to mention that both Joshua and Jason had a nasty respiratory thing that probably would have ended up with Sarah having pneumonia and a high probability of her being hospitalized with as sick as they were.  Instead, she has been on bi-weekly infusions of a solution made from plasma to help her be able to fight off infections like most people are able to do.

This infection started out as an allergy to ragweed, and now she has a little cough, runny nose, and a slight fever.  But her lungs are clear, and her temperature isn't anywhere near as high as it would normally be!  So she will start on an antibiotic today and hopefully be feeling good as new in time for her soccer game on Sunday afternoon.

Yesterday, Sarah had her 24th infusion.  We have been giving them since November of 2013, every other week.  This one took about an hour and 45 minutes to infuse.  She did great, and it doesn't even really affect her anymore.

During Sarah's infusion she likes to draw or play games.

This was immediately following her infusion.  Today you can't even tell.

8-20-2014 21st Infusion and doctor appointment update

Yesterday was Sarah's 21st 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.)

Sarah is still doing so well!  Monday, she had a follow up with the nurse practitioner (who we adore) at the allergy, asthma and immunology office.  We almost never get to have "follow up" appointments because we have historically been in there frequently for sick appointments.  So this in and of it self is HUGE.  While we were discussing bloodwork, Sarah said "What about my T cells and B cells.  Were those okay?"  I asked how she knew about those.  She said "I've been reading the books that come with my infusion stuff."

Sarah has been off her asthma meds since we got her infusion dose right and she quit getting sick.  So really she has been off it since May.  Her asthma numbers look better than they did before when she was on all sorts of medication!  She also has not needed an antibiotic since then either, which is a really long time for her!  We are so thankful this is working!

8-14-14 Visual Therapy Graduation and First Day of School!

Finally 8 months after her diagnosis, Sarah graduated from visual therapy yesterday!  When we went to the eye doctor on Monday, she said Sarah testing so far looked really good, her numbers all look really good, and that she would finish up her testing this week, and get her home maintenance schedule next week, then we would be done!  Instead of taking 30 sessions, I believe it only took 23, so that is huge.  She still has homework she has to do 3 times per week for the next 3 months.  And she still needs to patch her dominant eye 30 minutes/day until next week.  Then she will have the last follow up with the eye doctor in November to make sure everything is still going well.  At that point, she will be able to go back to yearly appointments!  We were happy with that.  (The doctor said that given all of Sarah's issues, she really didn't think she would be able to correct everything.  She just wanted to train her brain not to suppress that eye.  But she was able to do even more.) AND even better!  She finished her testing quickly on Wednesday and the therapist had time to give us our home maintenance.  So Sarah graduated and is done with the in-office sessions!  Yay!

She has had some HUGE improvements!  After her testing on December 31, we received a letter with her results.  Bear with me because this will get really long and involved, but there are several people interested in all of this.  If you aren't, feel free to skip to the first day of school pictures.

The letter that the doctor wrote said (I will summarize parts and quote parts) that Sarah has amblyopia (or lazy eye), and because her prescription was so much worse in the right eye, her brain did not use any imput from the right eye at all ~ it suppressed it.  (For example, they did an exercise where she would look through a machine and copy with her left hand what she saw with her left eye, and with her right hand what she saw with her right eye.  Her left hand drew a complete snowman.  Her right hand drew two lines.)  She also wrote "A poorly functioning system gives Sarah poor depth perception and difficulties with judging distances and sizes, poor accuracy for eye motor skills with eye pointing accuracy.  Her brain cannot focus and point her eyes together as a team.  Glasses will improve her overall vision at both distance and near; however, because of the great prescription in her right eye, it has not developed good acuity.  That means it cannot see as well as the left, even with glasses on."

Sarah had a very difficult time  trying to do the Developmental Eye Movement Test, which tests her tracking ability.  She was unable to do this test as she became too lost to finish the horizontal portion of the test.  However, she was able to complete the vertical portion of the test.  This is how quickly she can see the number, perceive the number, and say the number.  She scored on her age and grade level.  These results indicate a tracking problem.  Children with tracking difficulties often complain of skipping words or lines, re-reading and loss of place."  This explained well why she was struggling with reading, even though she knew how to read.

They retested her on all of the issues that she was having, and she made huge improvements.  In December, they tested her at the 2nd grade level.  This week, they tested her at the 5th grade level.

Visual Determination (the ability to discriminate the difference between figural units such as letters.  Difficulties in this area may cause misreading of words that have the same or similar beginnings or endings.  The child may also make errors when copying from the blackboard to the paper.)  Sarah went from 25% at the 2nd grade level to 75% at the 5th grade level.

Visual Memory and sequential memory She actually dropped significantly, but they think she was just having a squirrely day.  When she had to do exercises for homework and in therapy sessions with this, she did outstanding.

Visual Spatial Relationships & Visual closure (frequently show up in reading as substituting similar words like make for made.  The child may not scan an entire word from the first letter to the last when they read.  In other words, they only look at part of a word and then make a guess at the entire word.  This shows up in both phonetic and flash-known recognition skills.)  Visual Spatial Relationships Sarah went from 63% at 2nd grade level to greater than 99% at the 5th grade level.  Visual Closure Sarah went from 16% at 2nd grade level to 50% at the 5th grade level.

Visual Figure Ground (The ability to separate the important objects from the background of unimportant  extra material.  i.e. hidden pictures)   Sarah scored at greater than 99%.

Visual Form Consistency (Tests the ability to identify similar figures presented in different size, pattern or direction.  i.e. an A is an A even if it is up-side-down or a different size or color). Sarah went from 5% to 99%.

Developmental Eye Movement Test (see the paragraph on the Developmental Eye Movement Test in the letter to see what this is about)
Vertical - age on 12/31/13 at 2nd grade level she was at 80%.  Now at the 5th grade level she is at 93%.
Vertical - grade 12/31/13 at 2nd grade level she was at 55%.  Now at the 5th grade level she is at 96%.

On 12/31/13, they were not able to score her at all for the horizontal testing because she couldn't focus her eyes together to complete it.  Now at the 5th grade level she was scoring 45 and 60%, which is HUGE!

Word Sentence Copy she went from 30 letters per minute and struggling with spacing to 56 letters per minute which is well above normal. 

They also screened her for dyslexia.  Not because they thought she had it, but because they wanted to see how she handled language.  In December, Sarah placed at the 2nd grade level, borderline normal on word recognition, and normal on the phonetic portion of the test.  NOW, at the 5th grade level she scored normal for the word recognition and above normal on the phonetic portion of the test.


These pictures are Sarah with her visual therapist, and Sarah with her certificate when she graduated yesterday.  We are so thankful that this was so successful, and for all of Tambry and Dr. Price's hard work!

 

 

 

This week is not infusion week for Sarah, but she is still feeling really good.  She had her first soccer practice on Tuesday, and she has her first game on Saturday.  She has an appointment Monday with the asthma/allergy/immunology doctor.

 

Today was the first day of 3rd grade.  She is very excited to see what this year holds!  She even has her zebra backpack this year!

 



Her teacher is Miss Johnson, and Sarah loves her.

Her brothers and sister started school today too.  Joshua is in 8th grade, Zachary is in 6th, and Anna is in preschool.

Thank you for your continued prayers for her.  God is truly faithful in what He is doing for our family.

8-6-14 Good updates and Sarah's 20th infusion

Today was Sarah's 20th infusion.  She did great as always, though she is a little sore tonight and asked for some ibuprofen . She also had a little more itching than usual during the infusion, but I think she only took 1 Benadryl (we have been giving her two), so we had to add the second one in later during the infusion.  I was gone when she was needing to be pre-medicated, so she didn't get motrin either.

We started the morning off with a phone call from the nurse practitioner from the immunologists' office.  She already had Sarah's lab results back that we had drawn Monday.  Sarah's strep-pneumo titers were pretty much non-existent before treatment.  They want them above 1.8.  Now they are in the 11-13 range!  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 following an infusion).   Sarah's IGG started around 800 (the low end of normal for her). In February, after 6 infusions, she was up to 1200 and was still getting sick, though definitely with less severity.  She was still on antibiotics a lot though. We kept adjusting her dose, and now she hasn't been sick since April (not even needing asthma meds or anything) and she is at 1610!

Sarah also had visual therapy today.  Her therapist has started testing her to see where she is at compared to before because they believe she is at the end of needing therapy.  Before starting, she couldn't focus on things because her brain wasn't using her right eye at all.  She would look at the word blue and say "baseball".  I knew the issue wasn't that she didn't know how to read.  When they tested in before starting the therapy, she was at a 2nd grade level in reading words.  We could tell a difference within just a couple of months.  Now she is solidly 6th grade, and she even had several 7th and 8th grade words!  This is HUGE!  It should also have gotten rid of her dyslexia issues (most likely caused by the amblyopia).  She has to score that.  We will know more when we go back to the eye doctor next Monday for her progress evaluation.  But we are so excited!

God is so good!  I am so thankful that we have been able to make such progress with Sarah's health, and that we have a team that is working so hard for us!

8-3-14 Update on Sarah

Things have been going so well with Sarah's infusions that I often forget to update.  She has now had 19 infusions (and will have her 20th this week), and it doesn't even phase her at all anymore.  She still has some swelling afterwards, but it really isn't painful and doesn't keep her from doing what she wants to do.  She has been on this same dose (12 grams every other week) since April, and has not been sick at all since.  She has NEVER in her life gone 3 1/2 months without illness!  In May, once I figured out that this dose was going to work for her, I took her off all of her asthma meds.  She hasn't even needed her albuterol since then, and definitely not prednisone or an antibiotic.  She isn't even on her "maintenance" inhaler (Advair to try and keep things under control so she doesn't need her rescue inhaler (Albuterol) as often).  This is awesome!

Sarah will have to have her blood drawn before her infusion this week.  She will be in a trough (we will do it the day before or the day of her next infusion), so we will get a good idea of how things are looking.  Her last numbers looked SO much better, but she was still getting sick at that dose back in Feb (which was the last time we drew her blood).  I cannot even begin to describe how thankful we are that this treatment is working so well!

Sarah also has her next appointment with the eye doctor a week from tomorrow.  At that point, we are really hoping that we will be told that she is done with visual therapy.  At her visual therapy  appointment last week, her therapist said she was so impressed with her progress and she really thinks Sarah will be done.  I think she has had about 21 visual therapy visits, whereas she was originally told it would be at least 30, so this is also HUGE!  Since her appointment is at 11am on Wednesdays now, it would be fantastic to be done before school even starts since she would end up missing about 2.5 hours of school each week for this.  Once she is done, she will still have homework 3 times per week for the next 3 months.  But, right now, it looks like her brain is no longer suppressing her "bad" eye!  As long as she wears her correction and keeps the vision clear in that eye, her brain will not revert back to suppressing it.

Soccer starts next week for Sarah, and she is really excited!  She will go from playing 5v5 on a quarter of a field and small goals to 8v8 on a much larger field with larger goals.  She is very excited, and Zach has been working with her a lot this summer.  School starts August 14, and she is very anxious to see who she gets for a teacher.  Either person this year will be outstanding.

Thanks for reading and keeping up with us.  We definitely can tell your prayers are working.

7-5-14 Update on Sarah

The month of June was crazy with Jason and I renewing our vows on the 7th, and then taking a cruise and being gone for 9 days.  I feel like just now I am starting to recover from it all.  Anyway, obviously I am behind on my blog posts. 

Sarah has now had a total of 17 infusions, and is due for her next one on Wednesday.  She is currently receiving 12g in 60mL of fluid every other week.  I believe that for now, this is her "therapeutic dose".  It took a little while to get her dose figured out.  They started her at a certain dose because of her size, but it is not set in stone.  She started at 6g in 30mL bi-weekly in November, and we have upped it a few times until the point that she wasn't getting sick at all anymore.  Since being on this dose (almost 2 months), she has not gotten sick at all!  It is amazing.  And the infusions don't phase her at all anymore.  Her body absorbs it well, and she really isn't even sore anymore afterwards.  We are SO thankful that this has made such a huge difference for her (and for Anna too!).  And we are also thankful for everyone that continues to pray for Sarah.  We know that the prayers are the reason things are going so well.

Also, we did finally meet the new visual therapist.  Sarah has had 3 sessions with her, and has her next progress evaluation with the eye doctor on Monday.  This visual therapist thinks she is doing really well, but we will see what the eye doctor says.

I am posting some pictures of Sarah from our vow renewal.  She was a flower girl, and she also sang a beautiful song with her brother for us!

The video kids singing

 

 

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

 

Sarah and her Daddy dancing

She had licked him

All of us

 

The kids

 

 Our whole "wedding party" - bridesmaids, groomsmen, flower girls and ring bearer

 

Pic of Sarah and Zach singing

 

6-2-14 Update on vision issues

Today Sarah had her progress evaluation with the eye doctor.  The office had called to cancel her visual therapy last week and this week, and her therapist was out the week before, so I wasn't expecting a huge improvement.  We found out today that she quit, so we will have to be worked into the other therapist's schedule.  I am not sure how that is going to work and I am still waiting on a call from her.

Anyway, the progress evaluation went awesome!  At the last evaluation, Sarah could only see 20/30 (with a -2 digital correction) with her contacts.  Today she could see 20/25 and even a little 20/20.  That's huge.  Her recoveries are so much better.  Everything just looked awesome.  She was scheduled for 30 visual therapy sessions.  The therapist thought that might be a little conservative with all of the issues she was having.  Today the eye doctor was so impressed that she officially cut her from 30 to 25 sessions!  That is 30 less homework sessions and 5 less sessions in the office!  AND, she said that if she continues to improve so much, at her next progress evaluation she may tell us we are done then at 20 sessions.

She does still have to continue to patch her dominant eye for 2 hours a day.  She said she was keeping it that way because of all of the progress we are seeing, and if we reduced it, we might not see as much progress.  Also, if she reduced it, she would have only reduced it to an hour and a half, so it is better to just stay where we are at.

Anyway, we are VERY VERY happy with this news!  Definitely a step in the right direction.

05-28-14 Sarah's 15th Infusion

Amazing that we have already been doing these infusions for over 6 months with Sarah!  They have made such a big difference!  Sarah is amazing.  She has gotten used to having these done, and she doesn't complain or ask why any more at all.

We got everything ready and started her infusion.  She usually watches a show, reads, or plays on her tablet or DS.

 

 

This infusion, I had to run an errand.  Jason wasn't home and I wasn't comfortable leaving her home with the boys while this was going on.  I told her she would have to come with me.  Usually she cries and carries on.  This time, she just came with me and when it was done, we went into another room and removed the needles.   This infusion took about an hour and 40 minutes.  It was the 12 grams (in 60 mL of fluid) dose.  This picture is from when I took the needles out.  By the next morning, the swelling was significantly better. 

She still complains of soreness for a day or two afterwards, but it doesn't slow her down anymore.  She can still usually do gym and play at recess and play in soccer games.  Her next infusion is due on Wednesday, June 11.

4-30-14 13th Infusion Day and 5-15-14 14th Infusion

I didn't update this with the last infusion.  Sarah was feeling crummy again.  Right before this infusion, we talked to the doctor, and we decided that we would up her dose from 10g to 12g every other week.

This infusion (at the end of April) was still at the dose of 10g (in 50mL).  The infusion went well and was finished in about an hour and a half.  The night after that, Sarah had a soccer game.  She was worried because she is often sore and not up to doing something like playing soccer the next day.  She ended up playing one of the best games she has ever played in her short soccer career.  She scored two goals and was aggressive. 

She has still be battling this same crud.  She is coughing and has a runny nose and just generally not feeling great.  She did stay home from school yesterday just to regroup, get some rest, and try to feel better. She went to school today and participated in field day.

We did her infusion tonight.  We didn't get started until after 7pm, and it was 12g in 60mL, so it took longer than it was taking.  It was close to 2 hours before she was finished.  But, it looked really really good.  Hardly any swelling at all with this infusion.  So we will see how she feels tomorrow.  Her next infusion will be May 27.

Jason and I are renewing our vows in June, and Sarah is planning to be a flower girl (along with Anna, and they will be escorted by my nephew Robby).  She is also planning to sing a song during the ceremony.  She will do a great job!

4-16-2014 12th Infusion, Soccer Season & other updates

Sarah had her 12th infusion tonight, and it went really well.  I feel like we finally have all of the pieces of this dialed in. This infusion took about an hour and a half, and the swelling was relatively minimal.  She did not even have any bleeding afterwards when I took the needles out.  She is feeling really good so far.

During the infusion

 

 

Immediately afterwards

Sarah has played three of her eight soccer games so far this season.  She has still been feeling a bit icky ~ runny nose and cough, but no fever and nothing too major in the big scheme of things for her.  In the first two games, she played goalie for half of each game.  It was so fun to watch her because you can tell she has really been working with Zach.  Even in 2nd grade, she is really aggressive in goal.  She likes playing on the field as well, and had several runs down the field last night, and a few shots on the goal.  Here are some pictures from those games.

This is on the field

In goal and one of my favorites...you can see how fearless she is

More in goal

After the first game

And, this month is National Primary Immunodeficiency Month.   Often in med school, doctors are told "when you hear hoofbeats, think horses and not zebras." Well, in patients with PI, you have to think zebra. They cannot be treated in the same way as everyone else, and some things that are no big deal for most people, are a huge deal for zebras. They are unique and rare. They are often fighting a fight you can't see from the outside. You may think "they look fine. They don't look sick." That is because this is their "normal." 3 of my kiddos are zebras, so when I hear hoofbeats, I tend to think "zebra"...even here in Kansas. (By the way, we got a new set of bloodwork done on both Zach and Anna and are awaiting results to see if their extra pneumovax shots have helped them any.  We should have that next week.)