Category Archives: mia

HLA-B27 +

Mia’s blood test that came back as abnormal was for Human Leukocyte Antigen – B27, or HLA-B27 (a protein found on the surface of white blood cells). This should be negative, but her blood test was positive.  This is a marker that often occurs in people with an autoimmune disorder, but there are also many people that carry the marker, but have no symptoms of autoimmune disorders.  It doesn’t really tell us much more about her diagnosis, just that she is more predisposed to have an autoimmune disorder than someone who doesn’t carry HLA-B27.  Also, someone with HLA-B27 Uveitis is more likely to have the condition recur in the future.

We are working on getting her an appointment with a pediatric rheumatologist for a work-up and to see if she does have some sort of autoimmune condition going on.  The office called me today and said that before they can set up an appointment, all sorts of information and paperwork needs to be faxed from the Ophthalmologist and that our insurance has to pre-approve her treatment.  Right now, our insurance company is taking about 2 weeks for pre-approvals to go through, according to the rheumatologist’s office.

So the treatment plan for now is still the same.  The most important goal is to get the eye inflammation to go away.  We are continuing the eye drops for inflammation every hour, and the dilating drops 3 times a day.  Vision in the affected eye is still very blurry, but that is to be expected since it is constantly dilated and there is still inflammation.  She is complaining of pain in her legs and hips, but we don’t know if it might be arthritic pain or just plain old growing pains.  She also doesn’t have much of an appetite and seems to get frequent stomach aches.  We’ve got a follow-up eye appointment on Friday again, and are in a holding pattern for the appointment with the rheumatologist.  Continued prayers for her would be appreciated.  We are very thankful that she us mostly unaffected by anything that has been going on.  She is still playing despite any leg/hip pain and is still keeping active and doesn’t mind all the interruptions for the eye drops.  She is still plugging along with her Kindergarten work and is doing well.  🙂

 

Eye Update

As of this morning, her eye inflammation has decreased slightly, but she still has a long way to go.  Doc said if we consider her eye inflammation from last week to be 10 out of a scale of 10, this week would be an 8 out of 10.  So there is improvement, but not much,  We are increasing her eye drops for the inflammation to every hour while awake instead of 8 times a day.  If the corticosteroid drops don’t do a good enough job with the  eye inflammation, we may need to move on to oral corticosteroid medications.  We are still dilating her pupils 3 times a day to try to break up the scar tissue that is holding the pupil in an irregular shape. The retina and optic nerve both look healthy, so that is good.  Her ocular pressure is normal.  She has developed some cloudiness on her cornea (scarring, I think), but that is on the side as opposed to in her field of vision, so hopefully that won’t affect her vision.  Her blood work came back later in the day to show that she does have some sort of “inflammatory process” (not infectious) going on in her body, but I haven’t gotten specifics from the doc since this news came in after our appointment and doc just left a voicemail about it.  I hope to learn more about that on Monday.  As it is, the new finding doesn’t change our current treatment plan.  We will get a referral to a pediatric rheumatologist sometime in the future for more testing.  I expect to speak to the doctor on Monday to find out more about her blood tests that were abnormal.  We have another follow-up in 1 week.

She is taking all these eye drops like a pro… not fussing at all about getting interrupted every hour.  She wore a bunny ear headband to the appointment today to show her doctor because she thought she would like it.  🙂  Such a silly, sweet girl she is.  We are taking advantage of our Fridays together without the boys and doing some shopping and we go out for lunch.  It’s really nice to get to spend time with her alone.  Thank you so much to my awesome sis-in-law who has watched the boys each week!  And thanks to everyone who has offered up prayers and well-wishes on Mia’s behalf!

Brave Girl

Mia is afraid of needles.  She has been talking about how scared she is to get her blood drawn ever since we left the doctor’s office yesterday.  I tried to take her to the lab right after her appointment so that we could get it done and out of the way, but she had to be fasting, so we had to put it off until this morning.  She talked about how scared she was all evening.  Last night before bed, she was near tears in anticipation of being poked with the needle this morning.

I think that there is a lot of fear in the unknown.  So I described to Mia  the whole procedure and told her about when I’ve had to take a person’s blood when I was working and how I did it.  She asked me why they had to take her blood when it was her eye that was the problem.  (Really good question!)  So I explained that they needed to figure out why her eye was causing problems and that checking her blood would help give the doctor’s some answers about what is going on in her body.  She asked if they’d give her blood back when they were done.  I told her that they would just throw it away because they can’t put it back in, but that her body would make more blood.  She was still nervous, but I think it helped her to know what to expect and why it needed to be done.  She asked if she could bring her stuffed unicorn with her.  Who could say no to that?

We went to the lab this morning.  Of course, the patient ahead of Mia was another little girl named Mia who also had to have blood drawn.  We waited in the waiting room for our Mia’s turn.  Then the screaming began… The little girl ahead of our Mia was screaming before they even did anything.  She screamed when they tried to put the tourniquet  on her arm.  She screamed when they took it off.  She wouldn’t let them get near her with the needle.  She screamed and yelled, “what will it feel like?  how much will it hurt? No!  I’m not ready!”  I was worried that my Mia was going to lose it after witnessing that.  Now it was Mia’s turn.  We walked by the  cubicle with the screaming child and on to the opposite side of the room.  Each blood drawing station is only separated by a curtain and a cubicle wall.  You could still hear the screaming and crying.  Mia sat in the chair to get her blood drawn.  She looked so nervous!  I just smiled and showed her the lollipop that awaited her when she was done.  I showed her the rubber band tourniquet that would “hug” her arm so that the man could find the best place to get her blood from.  He put the tourniquet on.  Mia giggled at the idea of a rubber band “hug”.  The phlebotomist decided on a hand vein, and he showed her the cool needle he was going to use.  She liked that it was called a “butterfly” needle.  After cleaning with the alcohol wipe,  he poked her hand.  I was ready for the crying.  She looked at me like she might cry and reached for my hand with her free hand.  I held her hand.  I told her that her lollipop wrapper was pink and I asked her what flavor she thought it might be.  She said, “Raspberry.”  I told her she might be right and that she would find out soon.  Then I told her that she was doing great and that the hard part was over since the needle was already in.  She relaxed a little.  The phlebotomist asked her about her unicorn (who was watching from a nearby table).  He asked her if she liked “My Little Pony”.  She told him that she watches it AND that her big brother is a “Brony” (a boy who watches MLP).  He laughed.  She giggled.  About 5 tubes of blood later, he took the needle out.  She picked out a new hippo friend (she named him Pippo) from their basket of little stuffed animals for being so good.

She wasn’t done yet.  She still had to do another test that involved a needle just under the surface of the skin in her other arm.  She looked like she was going to cry again when I told her she had one more poke to sit through.  I asked her if she wanted to watch unicorn and hippo play “I Spy” while he did the next test.  She smiled at the idea.  So I put on a puppet show.   He poked her, and it was done, just like that.

No tears!  She told me that she was scared and she wanted to cry, but when he poked her, she realized that it didn’t really hurt that much.  Brave girl.  She and I prayed for God to give her courage and strength even though she was so scared and I definitely think those prayers were answered.  🙂

It’s (already) July!!!

Happy 4th of July!!!  Unfortunately, we live somewhere with extreme wildfire danger, so we aren’t allowed to set off any “fun” fireworks.  We plan on watching a city firework display at my in-laws house tomorrow night.  It will be a good view, but the actual display is a little ways off, so you don’t get to feel that “boom” rattle your bones… I LOVE that.  🙂  Some of my best summer memories were watching fireworks near the waterfront in VA… seeing the fireworks and the reflection over the water is wonderful!!!  I always miss living in Virginia Beach whenever it’s time for fireworks.  Hurricane season… not so much.  And the mosquitoes… totally don’t miss those!  If NM was beachfront, it would be the perfect state for me… it’s hot in summer, cold in winter, mountains with snowboarding/hiking/camping, not many skeeters, there’s the Rio Grande, big lakes…  Anyways, what was I talking about?  Oh yeah, Happy 4th of July, Everyone!

This year has flown by so far and most of it has been a big sleep deprived blur to me.  I’m so thankful for pictures because without them, I’d probably think I was just nursing a baby for the whooooole first half of the year.  Oh wait, I mostly was… but no pictures of that… that would be weird.

Kai is now 9 months old.  He’s on the verge of walking!!!  He has actually taken a step and a half in recent days.  Not long now, then it’s serious baby chasing time.  He’s still not sleeping through the night.  DON’T recommend letting him cry himself to sleep to me.  The other night, I forgot to turn on the baby monitor, so I didn’t hear him wake up during the night.  I slept really well, until 7, when I noticed it was light outside.  I went to Kai’s room and I heard him whimper crying with that hyper ventilating “sniff, sniff”.  Now keep in mind, he pretty much ALWAYS wakes up at 3:30 am or 4 am every night.  Poor thing had probably been crying for HOURS… and never once did it occur to him to just go back to sleep.  I picked him up and nursed him, and he was knocked out so quickly because he was so exhausted… Yep, I pretty much felt like the worst Mommy EVER.  His poor little voice was hoarse that day.  🙁

Sean and I are still finishing up 2nd grade in our homeschool… we AREN’T running late.  We follow a round the year schedule where we school for 6 weeks, then take a week off.  This way, it allows for vacations throughout the year during non-peak times, and reduces our burn out.  Plus, we (meaning I) don’t have to suffer through so much stinky review after 2 months of brain coma during a summer vacation.  We should finish around early or mid August, then have 2 to 3 weeks off before beginning 3rd grade.

Mia will be starting pre-K this Fall.  She turned 3 in January, and has been asking to “do” school.  I originally planned on waiting until she was 4 to start, but I think I should take advantage of her enthusiasm.  I’m a little skeered to start schooling 2 kiddos!  I’m sure it will take some tweaking of our schedule to figure it out…  By that, I mean I’ll probably really have to come up with a schedule and stick to it.

So yeah, it’s July!  It’s mine and Nathan’s birthday month (We share the same birthday, yes we do!) and both our mommies have b-days this month too.  Ugh… I’m turning 35 this month… I’m ALMOST old.  I remember thinking my mommy was old when she was 36… SORRY MOM!!!  That’s pretty funny, because anyone who knows my mom, knows that she will never grow up  old.  🙂  Love you, Mom!!!

Again, Happy  Independence Day, America!  Everyone please be safe, don’t start fires, enjoy those fireworks, and eat lots of hamburgers and hot dogs!!!

Poor neglected bloggy site

I’ve been terrible about writing on here lately because Facebook status updates are just so much easier and quick.  But sometimes, you need more than 420 characters to get your thoughts out.  Or so you think.  Nathan already blogged about pretty mych everything I was going to say about our weekend…   So here ya go.  Yep, hard to believe that Sean’s already old enough to lose his first tooth!  Where did all the time go?  Time went really slow while he was a little one and wasn’t sleeping through the night yet, but after that, it’s like time has sped up soooo much!

Aside from that, we’ve been keeping busy with school.  Sean is zooming along through 1st grade.  He also just started a homeschool PE and Art class through our local County run community center.  We had initially started a PE class through UNM, but he quickly got bored with that because they didn’t have them doing anything really fun, plus, we had to pay for parking every week which added up, and didn’t make all that much sense for just 30 to 45 minutes.  Oh yeah, and it was really early in the morning.  This new class starts just after lunch, and is offered 2 days a week instead of just 1, and it’s only $10 a month.  Good deal.

Mia is now 21 months old.  She’s lots of fun and is starting to talk a little better.  Whenever you ask her where something is, for example, her shoes, she responds with, “Shoooooes!  Where are yoooouuuu??”  She looooves animals and we always hear, “awwwwww, doggy!” when we drive by a dog park nearby.  She doesn’t like being pestered by her brother, and makes it very clear when he is invading her personal space, by screaming.  We’re trying to break her of that habit (screaming)… it’s pretty annoying.  And for some reason, that gives her brother even more motivation to pester her.

Nathan and I celebrated our 9th anniversary back in September.  It’s been a wonderful 9 years being married to him.  Again… time has flown by!  9 years already!!! I love that man… *sigh*

On Saturday, I took the kids to a Lowes Build and Grow Clinic.  Sean built a periscope out of a kit with wood, nails, and plastic mirrors.  He really enjoyed getting to hammer pieces together and watch it take shape.  He’s been expressing a strong interest in learning how to build things, so I  think going to the clinics at Lowes would be good for him.  They also hold kids’ clinics at Home Depot on the first Saturdays each month (I think).  Mia was content to sit in her stroller and watch all the big kids wielding hammers.  We already signed up for this Saturday’s clinic too.  Sean will build a snowman.  I wish I got to do that kind of stuff when I was little.