Category Archives: Uncategorized

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.

 

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!  🙂

New Puppy, Broken Wrist, Uveitis

April 2016 – We got a new puppy from a dear friend.  He is now 3-1/2 months old.  He is a fluffy ball of energy!  I have been wanting a new pup for quite some time, and my hubby finally told the kids and I we could have him.  His name is Wicket (like the Ewok – http://starwars.wikia.com/wiki/Wicket_Wystri_Warrick).

 

5/1/16 – Sean falls of a horse and breaks his right arm/wrist.  His foot got caught in a fence.  The horse kept going, but he did not.  He got the wind knocked out of him and fell on his arm, but is otherwise okay.  He smelled like manure at urgent care.  He said he thinks he fell in horse or cow poop.  Lovely.  He wasn’t really concerned about the deformed/broken arm, but he couldn’t wait to get home to take a shower.  🙂  The doc at Urgent Care put on a splint and referred us to an Orthopedic Hand Clinic.

 

5/3/16 – Our morning appointment at the Ortho clinic shows that Sean’s wrist is broken near the ends of the 2 arm bones.  The radius is broken clear through and the bone has become angled (about 40 degrees), hence the deformity.  The surgeon took a look at the x-rays and said it would be incredibly painful to try to reduce (straighten) the bone without anesthesia, so they scheduled him for surgery that afternoon.  We went in at 2, and around 4 pm, they performed the procedure.  It went well, but his bone kept wanting to pop back out of place.  They got it stabilized and placed another splint, and we had a post-op follow-up on 5/16/16 for more x-rays and a real cast.  In the mean time, to help prevent the bone from popping back out of place, they wrapped the splint with fiberglass (cast material) to harden it even more.  Sean couldn’t straighten his arm since the splint went up over his elbow.  I canceled school for 2 weeks while he couldn’t write.  It was a welcome break with everything that was going on.  This is one reason I love homeschooling.

 

5/16/16 – Post-op follow-up x-rays show that the bone has mostly stayed in place.  There is still around a 2 degree angle in the fracture, but that is likely as good as it will get.  It shouldn’t cause any loss of function or noticeable deformity. (Yay!)  Sean opts for the lime green cast, and we are happy to find out that he is able to get a short arm cast, which means no more sling and he can bend and straighten his right arm again!  He will be in his cast for 3 weeks, then another x-ray, and likely no more cast.  But he will still need to take it easy for another month after that for it to completely heal.

 

5/18/16 – Mia has a routine follow-up for her eyes.  She has been clear (no inflammation) since January 2016, and off the steroid drops since late March 2016.  Today her doc found another active flare (3+ cells).  With the active flare, we need to restart the steroid eye drops hourly  and the dilating drops 3x/day, and continue the 2 separate glaucoma drops.  We have another follow-up eye appointment in 1 week.  She also has a Rheumatology appointment on Monday, 5/23.  We hope to discuss what the next step is for treatment.  She has been on the max oral dose of Methotrexate, but it is still not completely controlling her Uveitis.  We will likely move on the weekly injections, maybe in conjunction with the MTX.

 

 

Mia’s Eye Files, Continuing the Taper

I have a 3 inch 3-ring binder where I’ve kept all the paperwork (doc’s instructions, etc.)  from Mia’s doctor’s appointments and prescriptions since she was diagnosed with Uveitis back in the Fall of 2014.  It’s just about full.  Supposedly, 3 inch binders can hold around 600 sheets.  She has been through A LOT in the past year and a half.  I call the binder “Mia’s Eye Files”.   We recently learned that Mia’s eye doctor will be leaving New Mexico.  We are bummed.  She is a wonderful pediatric ophthalmologist, and so great with kids.  So now, we will need to find a new Pediatric Eye Doc, and we still have no Pediatric Rheumatologist.  I’m thankful that Mia hasn’t had any arthritic symptoms.

As we continue to try to get Mia into remission from her Uveitis, today we are officially stopping the steroid eye drop (again).  She had her last drop yesterday.  We are continuing using 2 glaucoma drops  several times a day (for eye pressure) and a dilating drop three times a day (to try to break up some synechiae, where her iris is still sticking to her cornea).  She is on the maximum dosage of oral Methotrexate, so we are all hoping that it is enough to keep the autoimmune response at bay.  She had a scare a couple weeks ago that she might have been flaring in both eyes, but it turned out to be allergies and/or pink eye, and has resolved completely.  She currently has no inflammation in her eyes, but her eye pressure is still high in her left eye.  Also, her cataract is still growing.  The Doc said she will probably need cataract surgery in the future.  We are still patching her good eye everyday for 4 hours, and that is going well.  It has just become a part of life.  So that’s where we are right now.

We are holding steady for now and hoping she doesn’t begin to flare again now that we are off the steroid eye drops.  All the following systemic medications from here will need to be either shots or an IV infusion if the Methotrexate doesn’t work, so we are praying we don’t have to go down that route, but we will if it can preserve her vision.  Her vision in the left eye is now around 20/60 or 20/70, so she will probably need new glasses next month.  Please continue to keep her in prayer.  She is such a trooper, and really tries not to let things bother her.  Her last blood test was fabulous… no tears, and results look good, so her liver,kidneys, etc. aren’t being affected by the medication she is on.  Yay!

Uveitis + Cataract

We had a follow-up for Mia’s Uveitis this morning.  She has been on the steroid eye drop 3 times a day for the past week, and we are still tapering her off very slowly.  We are still dilating her eye 3 times a day , and she has been on her eye pressure lowering drops twice a day.   At the follow-up today, we learned that she has an early cataract developing in her left eye (the uveitis eye) and her pressure is still higher than it should be.  We now need to  increase one of her pressure lowering drops to 3x/day.  The cataract might be a side effect of the steroid eye drops, or due to the inflammation from the uveitis that we’ve been fighting for over a year now.  We are hoping that it doesn’t continue to worsen and affect her vision further.  We now need to increase eye patching of her good eye to 4 hours a day, instead of 2.   We will continue to taper down on her eye drops and hope that her cataract doesn’t worsen.  We are also continuing her oral Methotrexate and hope that will keep the uveitis at bay all by itself once we are off the eye drops.  If the cataract gets worse and affects her vision, it’s a possibility that cataract surgery will be needed in the future, but for now, we don’t need to worry about that.  I hope in the near future, the cataract treating eye drops are in clinical use and are an option for her if it comes to that.  They still need to complete live human trials, but they seem to work well for dogs and for human lenses in the lab.

This is not the news I was hoping to hear today, but we are fortunate that she didn’t have any sign of inflammation in her eye, and no cells present, and no flare.   I just wish she didn’t have the added problem of developing a cataract.   🙁

Since Last Time….

Since I blogged last, we’ve had to go back up on Mia’s prednisolone eye drops.  Hourly at first, and  now we are at 6 times a day, but we will taper down to 3 times a day in a few weeks and stay there until we see the doc again in January.  We also saw her Rheumatologist who increased her methotrexate dosage since her eye was still flaring up on the lower dose.  She is at a max oral dose right now.  If this doesn’t keep her uveitis quiet, then the next step is injectable methotrexate (weekly).   Mia hates needles, so I’m hoping and praying that we don’t have to go that route, but it is very common that oral methotrexate just doesn’t cut it because you absorb less of the drug orally than you do if it is injected.   We don’t know when we will see the rheumatologist next… actually, we don’t know who the rheumatologist will be… the old one seems to have moved, but he said we could see him in Phoenix if we wanted to.  They are still trying to find another Pediatric Rheumy to take his place here… so if you know anyone, New Mexico is in dire need of a Pediatric Rheumatologist.  The nearest ones right now are in Denver and Phoenix.

From here out, any  of the “next step” meds will be either injectables or even by IV infusion.  So we are taking it one step at a time, and hoping we don’t have to try the next step.

For now, her eye is quiet and clear, but we still need to get her off the drops as soon as we can.  Her vision in her uveitis eye has gotten a little worse since getting her glasses back in April.  With the recommendation of her eye doc, we’ve started patching her good eye for 2 hours a day to force her brain to use the bad eye, since her good eye was becoming more dominant.  She is putting up with the patching pretty well.  We bought these pretty eye patches with glittery designs.

Since increasing her MTX dosage, it seems her immune system is taking a harder hit… She has been sick with a cold/cough for a month now, and developed an ear infection and a cough that causes chest pain.  She’s been on antibiotics for a few days now.  The problem with MTX, is that it suppresses the immune system so the body can stop attacking itself in autoimmune diseases, but with a lower immune system, infections and illnesses can be easier to catch and harder to get over.  Just a simple cold for one child can easily cause a serious cold, leading to pneumonia or bronchitis for someone who is immunosuppressed.  So if anyone around us is ill or thinks they might be getting sick this cold/flu season, please let us know so we can try to keep Mia healthy.

In other news… Sean has a swim meet today!  He is a little intimidated because now that he is 11, he is in a higher age group than last year, so the kids are faster.  I’m sure I’ll post pictures after the meet.

Kai is becoming quite a sweet talker… Nathan said he might need lessons from him.  Kai is always coming to me and saying, “My beauty!” or telling me how much he loves me and how pretty he thinks I am… he is just way too sweet.  He certainly knows how to melt his Mama’s heart.

Putting the drops away

I’m putting the eye drops away.  We are stopping Mia’s eye drops  today after a slow taper since late June.  She has been tolerating the Methotrexate very well since July, her left eye has been “quiet” since July also, and her eye pressure has improved.  We are hoping and praying that the MTX is enough to keep her eye flare free.  If her eye stays quiet while on MTX alone, then we can begin to think about tapering off the MTX.

Please keep Mia in your thoughts and prayers that she will not have problems going forward and that she will go into full remission from the Uveitis.  We’ve tried twice before to go off the eye drops, and her eye flared up again within 4 days to a week.  This is the first time we are stopping the eye drops while using Methotrexate, so hopefully this is the medication that will work for her.  Her vision is holding steady.  She still has scar tissue that is giving her an irregularly shaped pupil.  She also still has some band keratopathy (calcium deposits on the cornea that form “bands”, caused by the chronic inflammation), but thankfully it isn’t in her visual field so it’s not really affecting her eyesight.

I’m so thankful that with all the inflammation in her eye that she’s had in the past year+, her eyesight is still really good and I pray it continues.

14 Years of Marriage, 3 More Weeks of Eye Drops, and a Partridge in a Pear Tree.

Nathan and I are celebrating 14 years of marriage today.  14 years of fun, laughter, love, being nerdy together, celebrating birthdays together, and just sheer awesomeness.  <3

M had another follow-up today.  Her eye is clear, no inflammation, eye pressures are pretty good.  We are decreasing her steroid drop even more (every other day), while keeping her pressure lowering drop to twice a day.  Then in 3 weeks, we are stopping the drops.  We have a follow-up with the doc in about a month and a half, and as long as the Methotrexate is working, she should still be flare free by then.  Please pray that it happens.  It’s exciting, and a little scary at the same time, but I know God is in control.  She also has a follow-up with the Rheumatologist tomorrow, so hopefully that goes well.  She will be due for some blood tests pretty soon… not fun, but necessary.

We all went out for National Coffee Day tonight.  Thanks Krispy Kreme for the donuts and coffee!!!  You helped make our little anniversary celebration special (and cheap).  🙂