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
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
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!
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 ” 6 do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. 7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”
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.
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!
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 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.
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.