Robotics, Stable Eyes, and Our Budding Artist

It’s been awhile since my last blog update, so here’s the scoop…

I’ve been coaching my older son’s Robotics team for the past 2 years.  We were taking part in a Robotics Challenge sponsored by the Air Force Research Laboratory La Luz Academy on Kirtland Air Force Base.  I had to attend a coach’s training and learn how to build and program a robot myself so that I could then teach and guide the team through building their robot.     It was fun to learn something new and I’ve always like putting things together and building things.  This year, our team was among the 30 teams who were invited to participate in the Expo.  Only 1/3 of the total amount of teams were actually invited to the Expo.  Our team this year was named “USB” for “United Students of Boe-Bots” (the type of robot we used).  The teams completed various activities in which they programmed a robot they built to navigate through different obstacle courses.  There were 2 relatively “basic courses”, a difficult maze course, and 3 more difficult courses where various sensors were needed.   This year we learned how to install and program line following sensors on the robots.  This came in handy for the team because they were the only team to complete any of the more difficult courses.  They successfully programmed a robot to trace out large cursive letters that spelled “AFRL”.  The team showed a lot of determination and persevered despite being unsuccessful several times.   By their last attempt, a room full of people had gathered to watch them run their robot to see if it would work.  When the robot made the last curve of the last letter and stopped at the end, everyone cheered.  It was so cool!!!   I was very proud of the way the kids didn’t give up.  At the award ceremony, our team received the award for “Overall Excellence” for scoring the highest on their assignments throughout the challenge and the various activities at the Expo.  The kids were so excited and happy!  They honestly didn’t think they would really win because last year, they had also been the only team to complete one of the more difficult obstacle courses, but they didn’t win any awards.  So this year, it was a wonderful surprise the way their hard work paid off.  🙂  Go team USB!!!

 

In other news…Brown Eyes Girl’s eyes are currently stable.  Her last eye appointment was in December and we aren’t due back again until May, assuming all continues to go well.  At the last appointment, there was no inflammation, eye pressures were good, no need to proceed with the YAG laser procedure at this time because her vision is still okay.   She just had an appointment last week with her Rheumatologist.  He said things are going well.  no sign of any  issues involving her joints, so that’s good.  She had to get her blood drawn again (this happens every 3 months), and there were even fewer tears this time than the last few times.  She is still on 2 different injectable medications that suppress her immune system so it doesn’t continue to attack her left eye.  She gets Methotrexate once a week and Humira twice a month.  The Methotrexate injection has become a breeze.  No tears, no complaints.  The Humira injections are still difficult because it stings badly as the meds are injected.  Rumor has it that the USA will someday receive a non-stinging version, like they have overseas, but it just takes a long time to work through the FDA approval process.  We are definitely looking forward to that.  Despite the immune suppressing meds, we’ve been blessed that she’s been enjoying relatively good health.  She’s only had 1 cold this fall/winter so far and it wasn’t even that bad.  I truly appreciate the efforts of people in keeping us informed if there is illness in their families and that they’ve been kind enough to keep the germs away from our girl.  It’s really been helpful!  Sweet girl was started on Vitamin D and is tolerating it well and after several months, her vitamin D levels have gotten back into the normal range.  All in all, she is doing well, healthwise!

Brown eyed Girl participated in a Jr. Lego Robotics League.  She and her team of 3 other girls had to put together a project about honey bees and hummingbirds.  They also built a model of a moving vehicle that would bring flowers from a nursery to where they could be planted so that more food could be provided for the bees and the birds.  Their team had a team cheer and and a team dance where they buzzed around like bees, then moved their arms in figure-8s like hummingbird wings.  At their Robotics Expo, they received a trophy for Team Spirit.

As for our youngest son, he continues to be cute and snuggly and is excelling in Kindergarten  despite the fact that he wouldn’t have been allowed to start kindergarten until next Fall since he has a birthdate slightly past the cut-off date the public school uses.  He is very interested in drawing and he uses up a ton of paper and fills up our walls and desks with his art work.  Everyday, he asks me what kind of picture i’d like for him to draw for me each day.  The other day, he asked me, “Mommy, what would you like today?”.  I didn’t realize that he was talking about drawing me a picture, so I jokingly said, “I’d like a big coffee from Starbucks.”  He drew me a big coffee from starbucks.  🙂  That kid knows how to melt my heart.

 

Cataract Surgery Update

BEG’s cataract surgery went well yesterday.  She tolerated the anesthesia just fine.  They gave her gas to fall asleep for surgery, then put in an IV for fluids after she was asleep.  It took her over an hour in recovery before she woke up.  We actually had to start trying to rouse her because she probably could have slept all afternoon.  She was motion sick on the way home and still groggy, but after sleeping for most of the afternoon and into the evening at home, she was feeling just fine.  Her pain level was pretty good as well.  She only needed tylenol once, and otherwise said it only hurt a little.  Her left eye was patched all day and night until her follow-up appointment this morning.

I’m ecstatic to report that at her appointment this morning, she was seeing 20/25 with her left eye WITHOUT glasses!  Her IOL (Intraocular Lens) implant is helping her vision since it has power, like an eyeglasses lens.  Her eye pressure has also gone down to 12 (normal).  We got a break from eye drops yesterday, but are resuming them today and also adding some in.  We need to keep an eye on her inflammation, which is non-existent right now, and the eye pressure.    She is also on steroid drops, antibiotic eye drops, as well as her usual dilating drop, and a couple glaucoma drops as well.  16 drops a day right now, in total.  My alarm is buzzing every 2 and a half hours or so, yet again.  Unfortunately, her eye is still pretty tender, and it stings pretty badly whenever I have to give her an eye drop.

We are very thankful for all of your prayers, well-wishes, FB messages, get well gifts/cards, etc. for her.  We are also so thankful for the wonderful medical team that we had yesterday… the surgeons, anesthesiologist, nurses… everyone was so great and made a rough day go as smoothly as possible.  We are praising the Lord for answered prayers!!!

Last Scheduled Appointment Until Surgery

Today was the last scheduled eye appt before BEG’s cataract surgery next month.  No inflammation AND her eye pressures were better.  🙂  Her cataract is still bad.  Her vision has gotten worse in the left eye.  Right eye is still 20/20, so that’s good.  Lord willing, her vision will improve after the surgery.  I don’t know how long it will take to determine that, but we have a follow-up the very next morning after surgery.  Doc also mentioned today that we would likely still have to do some patching after the surgery.  We are currently doing 4 hours a day – patching her good eye to force her weaker eye to work).

Between the eye appointments, rheumatology appointments, patching, numerous daily eye drops, weekly/biweekly injections, constant trips to the pharmacy, time spent on the phone with Doc offices and Insurance companies, and homeschooling 3 kiddos, we have a lot going on.  I sometimes feel overwhelmed, but I know not to rely on my own strength alone to get us through this season.  I’m always so thankful for the strength and comfort God provides and the many, many prayers He has answered!  Praise God!!!  I’m also so incredibly thankful for all of our dear friends who are faithful to keep our family in their prayers!  We are so abundantly blessed!!!

Measuring eyes

BEG had to have some tests run before her cataract surgery next month to measure her eyes.  One of the methods uses this tube that was placed over her eyeball (while her eye was held wide open) and then filled with fluid.  It didn’t look pleasant at all.  Thankfully, she had numbing eye drops put in her eye before these tests.  Another test they did was an ultrasound of her eye.  I never imagined that they would do ultrasounds of an eye!  They used a smaller transducer than they use for prenatal ultrasounds.  They put the gel on the transducer, then put it right on her eyeball.  I was amazed at how she could sit so still through that!  She said her eye felt gooey. 🙂

Her surgery is coming up in less than a month.  She is ready for it.  I hope it will improve her vision, especially at night.  Sometimes her patch time is at night time, and we go for walks at night.  She has to hold on to myself or her Daddy because she can barely see if her good eye is covered.

Her shots are going as well as can be expected.  Some weeks she gets 2 medications, others she just gets 1.  She still cries a little bit when she has to get a shot.  I hate putting her through it, but it seems to be helping.  She hasn’t had inflammation recently.  We have another follow-up tomorrow, so hopefully it’s all good news.    🙂

He doesn’t want to go to college…

Kai started Kindergarten today.  We are technically starting a year early since he was 12 days shy of the cut off date for this year’s Kindergarten classes, if he was attending public school.  But we homeschool, so we can start early and take our time learning the basics.  🙂  Anyways, when I told him that it was time to start Kindergarten this morning, he smiled, then made a sad face.  I asked him why it was making him sad to start school, since he has been asking about starting Kindergarten for a  while.  He told me that he doesn’t want to start school because then he will have to go to college someday and leave me.  What am I supposed to say to that?!  We got some extra snuggles this morning and then we did some reading and math.  I told him that he can stay with me forever, but that when he’s older, he’ll probably want some time away from Mommy sometimes.  He looked at me like I wasn’t right in the head.  LOL!  I love my sweet snuggly boy to bits!!!!!!

You Keep Using That Word… I Do Not Think It Means What You Think It Means

One of Mia’s spelling words for this week is “injure”.  We always go over the definitions of all of her spelling words.  She giggled a little bit when we got to “injure”.  She told me that when she was little, she thought that “injure” meant “to get better or to heal”.  So she said she used to tell people who were sick or hurt, “I hope you get injured!”.  I never knew this!!!  LOL!!!  Can you imagine a sweet faced little girl seeing you sick or hurt and telling you, with a smile on her face, “I hope you get injured!”.  So to any of you who she has told this to, she truly was trying to wish you well!  🙂  She said that someone (can’t remember who) finally told her that they didn’t think “injure” meant what she thought it meant.  The things that kids say… <3

Eye REALLY Don’t Like Uveitis!!!! I Don’t Either.

Eye appointment today… we had been tapering off of her drops since her last flare and things were going alright.  I went in to the appointment today thinking we would maybe be able to taper down a little more, and pressure would be good in her left eye.  That’s not what happened.  🙁  In Brown-Eyed Girl’s  left eye :  vision was a little worse, cataract was worse, optic nerve had small changes for the worse, eye pressure had gone up higher than it’s ever been.  Still some slight inflammation present.  Doc wants to set aside a cataract surgery date for 2-3 months out as long as we can achieve “no inflammation”.  She also wants to consult with a Glaucoma doc to see if they think BEG might need a procedure to help her eye be able to drain again, which would help her eye pressure.   BEG is having trouble taking her MTX orally, so we might have to go to shots.  The last Humira shot went better, but it still stinks to make her cry.  She goes through so much.  Over the past year and a half that we’ve dealt with her Uveitis, I’ve never really gotten down about it, but today… tears.  Ugh.  Please keep us all in prayer as we continue fighting this disease and fighting to keep BEG’s eyesight.

So to get over the Uveitis funk, let’s talk about blessings!!!  We were blessed to have just taken a fun road trip with my mom back to the East to see relatives who I haven’t seen in forever.  It was so nice to get to hug each of them, meet their babies, spouses, etc.  Also got to go to some fun places… Dinosaur Museum in Tucumcari (NM), Graceland, GA Aquarium, World of Coke, Audubon Aquarium in NOLA, Rode the steamboat Natchez, Destrehan Plantation near NOLA, beach in Galveston, TX.  We got to see the country as we drove… Arkansas is a very pretty state!  I’d love to go back and explore the Ozarks.   Some of the bridges we drove over were incredibly high over the rivers and lakes!  I’ve decided that road trips are pretty fun.

We are blessed that Nathan became a permanent employee last month and that his benefits began this month.  That will help us out with all the doctor visits and such.

We are blessed with wonderful friends and family that pray for us and send us well-wishes and encouragement.  The burdens we face in life would be much more difficult without you guys.

 

 

 

 

 

Cast Away, My Brown Eyed Girl

Sean got his cast off on Monday, and DOESN’T NEED SURGERY!  Ecstatic… yes, I am.  It’s nice to not have to wrap his arm in a trash bag for every shower.  Yay for answered prayers and Yay for how quickly children heal!  He still needs to be careful and not do anything “risky”, then around 4th of July (2 full months after his procedure), he can resume activities that could cause bone breakage.  Can I just wrap him in bubble wrap at that point?

Brown-eyed girl had an eye appointment this morning.  Things are looking good after her flare a few weeks ago.  We are decreasing her steroid eye drops again to 3x/day for 2 weeks, then going to 2x/day for another 2 weeks, then we have a follow-up in a month.  We are continuing her dilating drop and her 2 different eye pressure drops as well.  Her eye pressures look stable.  Her eye doc had her last day earlier this month, so we are sad to see her leave.  We are seeing another great Pediatric Eye Doc at the same practice, so it’s nice we don’t have to search for another doc.

Brown-Eyed Girl (BEG) started on Humira earlier this month.  We have done 2 shots so far.  The first one wasn’t horrible, but it wasn’t pleasant.  Although I’m not afraid of needles, she most definitely is.    She cried before we even started.  I got it done quickly.  Her Daddy held her leg still and hugged her.  I almost started crying too… that was unexpected.  I hated that I had to cause her so much pain.  I left the room to compose myself with the excuse that I was getting her a tissue.  I didn’t think me losing it in front of her would help the situation.  Apparently, the shot stings pretty horribly.  We did finally get a laugh when I told her that I wished that I could get the shot for her and then a tube could bring it from my body to her body easily and without any pain.  We giggled over the image of the 2 of us being connected by a tube, and the fact that we wouldn’t have any privacy when we needed the bathroom.  🙂  The second shot went worse than the first.  My BEG was trying to push my hand away and yelling “No” at me.  For anyone that knows her, you know she is a pretty easy going kid and is always very compliant when we need to give her meds.  Her Daddy had to hold her leg and her arms and I had to get it done quickly again.  Humira totally stinks in terms of how painful it is, but Lord willing, this will help keep her eye quiet, long term.  BEG was upset with me after the 2nd shot.  She wasn’t wanting me to really hold her.  But at bed time, she told me to read her dry-erase board in her room.  It said, “I love Mommy so much!”.  She said she wasn’t upset with me anymore and that she knows why we need to give her the medicine.  Ugh… my sweet girl endures a lot.  We don’t need a shot this week, so that’s good.  We’ll see how the next one goes next week.  We told her that we can start doing something fun afterwards when she doesn’t put up a fight.  She needs more fun… I think we all do.

The appointments this week have been good!  So thanks for all the prayers on behalf of our kiddos!!!  We’ve had a good week of answered prayer.  Praise God for that!  <3

Arm Still Broken… :(

Well, we had our follow-up for Sean’s arm today.  The doc was hoping for results that would indicate that his bone stayed straight and that the healing is far along enough that he wouldn’t need to be in a cast at all anymore.  Unfortunately, this is not the news we got.  After his surgery, they got the bone straightened to about 2 degrees of angulation.  Now the bone is at a 10 degree angle, which is the absolute maximum it can be for a kid his age.  The fracture is still very visible on x-ray, so there is still a chance that the bone could shift even more.  The docs actually asked if he re-injured it again somehow because that is what it looked like.  We couldn’t think of any particular moment, but we know some kids have been a little rough with his arm while it was in a cast.  If the bone does shift, it means that he will have to undergo an open surgery where they have to cut the bone and reset it.  Please pray that doesn’t have to happen.  He is back in another cast for at least 2 more weeks (he chose yellow this time).  Next x-ray and appointment is June 20.

To all the parents of young ones that hang around Sean:  PLEASE talk to them about not doing anything rough with Sean.  He has been telling us over the past few weeks about kids jumping on his arm and whacking it with wooden swords or sticks because they think it is as tough as armor.  He has asked them to stop, but sometimes they sneak up behind him.  We’ve also had kids trying to squirt him with water guns… please let them know that if his cast gets soaked, it might not support his bone properly and we have to get it cut off and a new one re-applied.   I know the kids don’t mean to be rough, but we really need to be careful with his arm to avoid further surgery, so please just mention it to them.  Thanks!  🙂

Needles Don’t Scare Me

I’ve never been afraid of needles.  I don’t ever remember crying when I had to get shots.  I have to watch whenever I have to get my blood drawn, an IV inserted, or get an injection.  When I was a Medical Technologist, I learned how to do phlebotomy.  When I was little, my mom told me not to touch her sewing machine, but I didn’t listen and I got a needle through my index finger.  Even after that, needles don’t scare me.   I guess it’s a good thing that needles don’t scare me.

We learned today that Mia will have to add in another medication (Humira) that  is delivered by subcutaneous injection, and I will be the one to administer it to her.  For now, the injections only have to be every other week, and she will still remain on her Methotrexate prescription.  Results have been very good for a lot of kids who have had to resort to using Humira.  We are praying for the same result for Mia.  She is not excited about getting shots, but when we tell her about how she could lose sight in her left eye, I think (I hope) she understands why it is necessary.

We saw a new (temporary) Pediatric Rheumatologist today.  She was really great and spent the time to talk to Mia to explain things in terms that she can understand.  She expressed to her the severity of her disease , and the consequences of not getting her medication (losing even more sight than she already has, or losing it completely).

I went through a training with a nurse on how to give the injection, and we brought home a training kit with a spring loaded syringe with a covered tip so that we could practice.  We have to wait until our insurance pre-approves the medication so that they will cover some of the cost.  It’s a little insane how much it costs without any insurance or financial assistance.  Thankfully, we have insurance and the doc’s office gave us a card to receive discounts on the co-pay amounts.  It sounds like it brings the cost down quite a bit (1% to 10% of the actual cost), depending on how good your insurance is.  I know a lot of people believe that the pharmaceutical companies are only in it for the money, but this company seems to  really be trying to make sure patients who need this drug have access to it.  There are even cases where they provide the drug for free for those with no insurance and very limited income.

I need to vent a little (a lot) today.  It’s frustrating that we have to start up injections.  It’s sad that she has already lost some sight in her left eye… she is only 7 years old!!!  I wish she didn’t have  to get her blood drawn so often.  It’s so hard to see her struggling to read something and that she has to hold books so close to her face sometimes.  It’s hard when I see kids (and adults) staring at her, making faces, or pointing and whispering when she has to wear her patch out in public.  I hate that Uveitis can creep back up after things were going so well for a while.  The rollercoaster of emotions is exhausting.  It’s so annoying to have an alarm go off EVERY SINGLE WAKING HOUR (sometimes more often) to remind you of an eye drop.  It is so hard to second guess every medical decision you make on her behalf, even though you’ve done TONS of research on the topic and you and all the specialists are pretty confident that it’s the right decision.  There are a lot of hard things about her situation, so I try to constantly count our blessings so that I don’t start to only see the negatives.  Our reasons for thankfulness always outweigh the troubles!

We are blessed that we have access to modern medicine and that she hasn’t already gone completely blind in her left eye.  We are blessed that I am able to homeschool her, so we can keep up with medications and doctor’s appointments.  We are blessed to live near family that can watch my other kids so they don’t have to wait around at the rheumatologist office for 2 hours during her appointments.  We are blessed that Hubby has a great job that allows him to support our family, including the medical bills.  We are blessed that her doctors are all great (even the temporary ones) and spend all the time necessary with us instead of rushing through the appointment because they are behind schedule.  We are blessed that we have a very sweet, strong, brave little girl who doesn’t seem to  mind everything she has to go through, whom also all trusts in God and believes in the power of prayer, which always comforts her.  I’m thankful for all the answered prayers we have had on her behalf and for all those who faithfully keep her in their prayers.  We are blessed that the uveitis is only affecting her left eye.  Also, even though her symptoms of uveitis are sad (photophobia, eye pain, redness, etc.), it is a blessing that her disease is symptomatic, so we know when to take her in to the doctor.  So many little ones have gone blind even before the uveitis is discovered.  I am thankful that God is in control and He knows our needs.  I am also thankful that needles don’t scare me.

Philippians 4:6-7  ” do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”