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 Mia’s inflammation is no longer active.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!
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.
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.
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!
Mia has been on a corticosteroid eye drop, 8 times a day, for a few days. It has dramatically cleared up most of the redness that was visible in her eye. We won’t know about any of the internal inflammation until her follow-up appointment later this week. She is also on a pupil dilating eye drop 3 times a day. Because of the inflammation and scar tissue that has developed, her pupil is no longer round. I’m not sure if it will ever return to a regular shape, even after treatment. Her vision is still very blurry, but that is expected since her pupil is constantly being dilated. We won’t have the results from the blood tests until the appointment later this week as well. Thankfully, she is living life as she normally does. Her wonky vision doesn’t seem to bother her unless she is in bright light. If anyone sees her wearing sunglasses, even indoors, it is because she is very sensitive to light since her pupil is always dilated. It’s not because she’s going for the “movie star” look.
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.
For those interested in an update on Mia’s eye: She was diagnosed with probable Uveitis in her left eye. Her vision in that eye is greatly affected due to the inflammation and scar tissue that has developed from it. She has been put on eye drops to control the inflammation (8 times a day) and to dilate the pupil (3 times a day) in hopes that the scar tissue will eventually break up. She needs to go in for more testing since Uveitis sometimes has some sort of systemic underlying cause such as some autoimmune disorders (juvenile arthritis, lupus, etc.). The Ophthalmologist will be scheduling weekly appointments to follow her case. Please continue to pray for Mia. She is such a trooper, but she is so scared of needles, and they will need to draw blood today (and possibly in the future) to figure out what is going on. Thanks so much for your prayers for our sweet girl!
In the middle of math today, Mia asked me, “Mommy? Do you want to know what I think of you?” That was a scary question!
My mind started racing… “Oh dear, did I yell at her earlier for something and she’s really gonna give it to me and let me know what horrible mother I am? Is she going to tell me that my homemade macaroni and cheese tastes gross and that she wishes I’d just get the blue box stuff? Is she going to tell me that she wishes I wouldn’t homeschool her and that she wants to go to public school? How do I answer that? Do I REALLY want to know what she thinks of me?”
I said, “Um, yeah?”. I held my breath.
That little girl said, “I think you are really good at teaching me how to read and that you are a nice and really good Mommy for all of us.”
Exhale! Fighting back tears. “Aw, thanks Sweetie!”, I replied. “Do you want to know what I think of you?”
She smiled and said, “Okay.”
“I think you are strong and smart and I love how caring and sweet you are to people!” I told her.
Her smile got bigger.
Proverbs 16:24 says “Pleasant words are like honeycomb, sweet to the soul and healing to the bones.”
How often do we only let people know what we think when they are doing something wrong or that we don’t like, but we don’t point out the things that we think they are doing really well? Probably too often. Go tell someone honestly how great you think they are… give them some encouragement. Go give them some honeycomb.
A recent post on a homeschool blog I follow pointed out the example sentences that pop up when you look up the word “homeschool” on dictionary.com. What are your thoughts on this?
“If she can’t find anyone willing to validate her helicopter parenting, she’ll homeschool.”
“If you want to keep your kids from reality and turn them into mindless automaton copies of yourself, homeschool them.”
“If you wish to teach your children such nonsense, then homeschool where lame propaganda can remain unchallenged.” (this one shows up on the mobile version of dictionary.com)
I’m not exactly sure how they choose their sample sentences (I can’t find any info on their site), but I read from another person that they are randomly picked from sources online. However, the bias of these sentences doesn’t seem all that random to me.
Kai had a potty accident tonight because he was too busy playing a game with his sister. I told him, “Don’t pee in your pants!”. He said, “I just a little kid!”. Touche. I forget he’s not even 3 yet.