Author: bing

We’ve been enjoying the beautiful weather here lately.  We even got a thunderstorm WITH some small hail and thunder today!!!  My little seedlings in the garden are happy.

We’ve been very busy recently with multiple doc appointments for a couple of the kids.  I’m so thankful that we are able to homeschool… the flexibility makes our schedule do-able.

Older son is in the early stages of preparing to get braces.  He just got a palate expander put in today.  Poor guy is in some discomfort, and is still re-learning how to speak and swallow with that thing in his mouth.  He’s also more drooly.  Note to Self:  change his pillowcases frequently. 🙂

Brown Eyed Girl went in last week to see her Primary Doc because she has been having some hip/back pain (in her Sacroiliac joint) for the past month or so.   The concern is that her body might be starting some joint inflammation and the sacroiliac joint is an area of concern because it could indicate ankylosing spondylitis.  She is also at a higher risk of developing ankylosing spondylitis because of the HLA-b27 gene that she has.  Anyways, the doc did x-rays and a few blood tests and all were negative, but that doesn’t necessarily mean that she isn’t starting to have problems with arthritis.  It could mean that it is early on in the disease.  So we have a follow-up with her Pediatric Rheumy next week.  In the mean-time, they have prescribed Naproxen for her pain and possible inflammation.  It is working well and she is back to running without pain. (Yay!) We had been giving  her Tylenol and Ibuprofen, but it wasn’t having any effect on her pain.  Hopefully we can get to the bottom of her pain and hopefully it is not arthritis.

Brown Eyed Girl also had an eye check up today.  It has been since December that we saw her Ophthalmologist.  Everything looks good.  No inflammation.  She does have some cloudiness on the posterior capsule of her eye and might need laser surgery to clear that up in the future… but for now, her vision was 20/20 with glasses, so we are pretty happy about that.  Her eye pressures are also good.  We are going to drop one of her glaucoma eye drops and hope that her pressures still stay down.  We will have a re-check in a month.  Yay for clear eyes!!!!

Our youngest  is still improving his art skills and draws a few pictures every day.  Hubby likes to say that he pretty much puts out a book of art every week.

Our homeschool year is starting to slow down a little.  Most of our little classes and playgroups pause or slow down during the Spring and Summer.  I’m thankful for this time of more relaxation and time to work in the garden.  Plus, more time for the kids to get dirty in the sand box and get soaked playing with water balloons and the hose.   This is also a time to play some catch up in some of the subjects where we fell behind a little.  It’s funny how a child can get behind in one subject but is already in the next grade level in another… Oh well… I’m sure it will all even out by graduation.  😀

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.

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.

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