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.