May 2016 – Vanessa

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

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.