Category Archives: mia

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.    🙂

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

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.”

 

Didn’t make it to 2 weeks…

It has been a little less than 2 weeks since her last eye drops and her left eye is pink again.  🙁  We have an appt with her eye doc tomorrow afternoon.  I assume we’ll be going back on the drops again temporarily, and will possibly have to make an appt. with the Rheumatologist to see if they need to tweak her Methotrexate dosage or anything.  We’ll see what they say… Feeling a little frustrated, but still thankful that her health is generally pretty good and no symptoms of arthritis.  I just pray that we can preserve her eyesight over the long haul.  Her eye looked a tiny bit pink the other day, but she said it felt fine and that she could see just fine.  I asked her about it again today, but instead of taking her word for it about her seeing clearly, I asked her to read me something.  I knew when she struggled with something simple, she was having problems.  When I asked her why she didn’t tell me right away that her vision was a little cloudy, she said it was because she didn’t want to have to go to the eye doctor AGAIN.  Poor gal… if I’m feeling frustrated, I can’t imagine how she is feeling.

Rheumy Follow-up, Adding New Medication

We finally got an appointment for a follow-up with the Pediatric Rheumatologist.  We had to miss an appointment in April because of being out of town, and they called yesterday to see if we could come in early this morning.  We have been on a waiting list since April, so there was no way we would miss this appointment. Thankfully my mom was able to meet me at the clinic to watch the boys while I went in with Mia.  (Thanks Mom!!!)

Since her uveitis is flaring up every time we go off the eye drops, we need try other meds to get her immune system to stop attacking her eye.  The first one that is usually tried is methotrexate, since it has been in use for a long time, and the side effects and safety in children are known.  We will be starting on MTX (Methotrexate) this week.  Please pray it goes well.  As long as she tolerates it orally, we can administer it with weekly tablets, but we may have to go to a weekly shot later on down the road (I’d have to do it myself – dreading having to do that) if it causes too much nausea.   The MTX will compromise her immune system, so she will be more prone to illnesses.  If anyone who will be around us is sick or might be sick, please let us know, so we can take a little extra precaution.  The drug also affects folic acid in her body so she needs to take a supplement as well.  The nurse said most kids tolerate the MTX just fine with little or no nausea… I’m praying she will be in that group.

She had to have more blood tests today, and more in 3 weeks.  She is such a brave little girl.  She cried a few tears when the needle went in, then proceeded to laugh at her mommy being silly while the phlebotomist was drawing the various tubes of blood he needed.  I was threatening to lick her post-needle lollipop and stick it in my hair.  🙂 We will be monitoring her liver function while she is on MTX since it can affect the liver.  If she does start to have liver problems, they will hopefully resolve after discontinuing the meds.   I hate that this has become a part of her life.  I wish I could take it all away.  She asked me today why there are so many things wrong with her.  Ugh! Makes me want to cry.  I don’t want her to see herself in terms of “what’s wrong with me” because she has health issues.  I want her to see what I see… how wonderful, strong, brave, capable, and courageous she is despite her health issues.  She might have this eye/autoimmune issue, but otherwise, she is healthy, so I’m very thankful for that.

The Pediatric Rheumatologist (the only one in NM) we first started seeing is now only seeing patients one week each month.  The clinic has another Pediatric Rheumatologist that is flying in from California (we saw her today) for a week each month to also see patients.  They currently have 2 positions open for permanent Pediatric Rheumatologists, so hopefully they are able to fill those positions soon.  It is very hard to find someone in this specialty since there are only about 300 Pediatric Rheumatologists nationwide.  I’m so glad that we are still able to see a doc here in NM, and not have to travel to another state to see a specialist.  This is why it has been so hard for us to get an appointment.

The Rheumy also said that Mia’s joints were hypermobile (too flexible) and recommended that we take some precautions to help prevent pain and injury.  She is very flat footed, and this might be the cause of her frequent foot, leg, hip and back pain.  The doc recommended getting her arch support inserts for her shoes and taking extra precautions to try to prevent injury when she is doing sports activities.  She said she should try to stick with lower impact sports like biking and swimming, and that gymnastics (which is what she really wants to do),dancing (which she loves to do), and running (which she also enjoys) might not be the best fit.  I’m a little torn on what to do there… I don’t want to limit what she participates in based on what might happen or injuries that might occur.  People get injured every day, right?  But at the same time, I would feel guilty if she got injured doing something the doc said was a bad idea.  I just don’t want to limit her activities based on “what if’s”.

So for now, her eye is stable.  We will start MTX and hope that will allow us to decrease the eye drops down to zero.  Then if she stays flare free on MTX for a while (1-2 years, usually), we can start to wean her off if it and hope and pray for complete remission.  Her vision is stable in the bad eye, the last flare didn’t seem to cause further damage since we were able to be seen right away.  She still has plenty of scarring in that eye though where the pupil is stuck down and oddly shaped.  Please keep us in your prayers and thoughts.  Keep praying for healing and for us and her team of docs as we make decisions for her.  Pray that she tolerates the MTX with minimal side effects.

 

Pediatric Rheumatologist Appointment

Little Miss had an appointment with the Pediatric Rheumatologist today.  I thought we’d have to wait until the beginning of 2015 to be seen, but they called last week and said they had an opening  (yay!).  No joint issues were obvious, but he noticed that her left leg muscles are larger than her right leg muscles.  He said this is sometimes seen when one leg is used to compensate for the other leg when kids have joint pain.  He is referring her to a Pediatric Ortho Doc and is recommending Physical Therapy to strengthen her right leg.  Once again, we have to wait for our insurance to pre-approve the treatment to see the Ortho doc, so we just wait.  He recommended PT twice a week for an indefinite period of time.  She is also being referred to a Pediatric Dermatologist for a few skin and fingernail issues.  He wants to make sure that she does, indeed, have eczema and not Psoriasis. Psoriasis is a concern because it can also affect the eye.  If it is Psoriasis, treatment would still be the same, but it’s just a good thing to know.

New blood tests were ordered today.  It took 3 sticks and 2 different phlebotomists to get blood.  She did SO WELL.  She cried a little, but it was mostly in anticipation of the needle.  How I wish I could  have the needle sticks in her place!  She amazes me that she is still so sweet and talkative even when she is crying and scared.  She was telling the phlebotomists about her brothers, video games, board games, unicorns, etc.  Fun Fact:  The phlebotomist who did her blood draw today was one of the ones who trained me when I was doing my clinical training in Med Tech school about 15 years ago.  That was pretty cool.  🙂

12/5/14 Eye Update

Today’s check-up went well.  Mia’s inflammation is no longer active.  It has mostly cleared up.  Whoo-hoo!!! We will be tapering down on the corticosteroid eye drops 6x/day this week, 4x/day next week, 3x/day the following week, 2x/day for a week, 1x/day another week, then no drops for a week before going in for her next follow-up in 7 weeks.  She still has a couple of spots of scar tissue on her iris, but the pupil shape has improved. We will continue with her eye drops for dilation until further notice.

The only problem today was that her ocular pressure was a little high.  This is likely due to the use of the steroid eye drops.  Since we have to continue using the steroid drops, we also have to add in another eye drop to combat the ocular hypertension twice a day.  So we are still having to do a TON of eye drops, but there is an end in sight.  After tapering down on the steroid drops, she may be able to go without them, or only need them occasionally to keep her eye healthy.

Her eye doc is happy with how things are progressing (as am I).  We still don’t have an appointment date for the pediatric rheumatologist since we are still waiting for pre-approval from insurance.  Mia’s vision is still improving little by little.  Since our next appointment isn’t until January 16, this will be the last eye update for 2014, assuming things go as planned and continue improving.  Thanks to everyone for the prayers and well-wishes!

Eye Appointment #3 Update

Mia had another follow-up appointment with her awesome Pediatric Ophthalmologist on Friday.  Her inflammation is down to about 50% (answered prayer!) and all structures in her eye are looking good and her ocular pressure is normal and stable.  She still has some scar tissue on a few spots on her iris, so her pupil is still an odd shape, but it is definitely looking better than before.  We have another week of hourly corticosteroid eye drops, then we will try tapering it down to every 2 hours.  We have to watch for rebound inflammation, and if it starts to increase again, then we will go back to hourly drops.  We will also continue the dilating eye drops 3 times a day to continue to work on the scar tissue that is remaining.  Over all, her progress is going well.  At this time, there is no need for stronger oral corticosteroids (another answered prayer!).

We are still waiting for all paperwork and approvals to go through so that we can bring her in to see the Pediatric Rheumatologist at UNM Hospital.  It isn’t an urgent situation since she isn’t showing any sort of joint symptoms.  This condition is likely to return throughout her lifetime, so hopefully if it happens, we can always catch it early enough so that it doesn’t cause permanent damage.  That’s a bummer, but it’s good that we know what to look for now.  Another great development this week is that her vision in the affected eye is much better than that first week we came in.  Hopefully it will continue to improve as the inflammation continues to dissipate.  Our next follow-up appointment with the Ophthalmologist will be in 2 weeks.

Did you know that there is only 1 Board Certified Pediatric Rheumatologist in NM?  We are very fortunate to have one here, since I’ve heard that some people have to travel to different states to see a specialist.  Apparently, there are fewer than 200 certified pediatric rheumatologists  practicing in the US.  We are certainly very blessed to have access where we live.