Wow, what a LONG day! I am so tired, but excited to update you on all the new stuff we found out today and what our treatment plan looks like.
A special thanks to my mother in law, Diane, who drove down last night so she could be here with Jack this morning while we were gone and take him to school! Also, a big thanks to my parents, and Jeremy and Amy, for all the help with transporting Jack around to daycare, school, home, etc., feeding him dinner, and being something "fun" for him while we've been so focused on Lia. I had flashbacks to Kansas City over the last couple weeks, and how terrible it was only seeing him on the weekends for weeks, and relying on my parents and in laws to take care of him for that incredibly challenging month-long hospital stay. Handing off Jack to different people and relying on all of you to get him where he needs to be while we focus on a different child is a hard thing for a mom. I'm so thankful to everyone who is willing to help keep his schedule as normal as possible.
5 am came early this morning as we got up and headed back to Gillette Children's Specialty Clinic. We didn't even bother getting Lia ready, just tucked her into her car seat still in her pajamas, and headed north. Again. We met with Dr. Aken a pediatric rheumatologist. She spent A LOT of time talking with us about Lia's symptoms, her (extremely long) medical history, our family history, and then gave Lia a thorough "range of motion" physical, testing all her joints,which was really interesting to watch. Lia was so well behaved. I was so proud of her. She did everything Dr. Aken asked her to do, which even included running up and down the hallway, and bending her hips, knees, elbows, wrists, shoulders, in all sorts of directions.
I'm going to try and sum this up the best I can. Here's the rundown.
1. Turns out not only is her left knee swollen, but also her right one. There is fluid on it also. I had no idea, because I always paid so much attention to the left knee and thought the right one was "normal" looking. Oops. (My poor poor baby!) In addition to both knees, her right ankle is "borderline" (doctor's words) swollen.
2. What can you conclude when more than one joint is swollen? Rheumatoid Arthritis. Do I sound like a broken record? That is the original diagnosis given to us 3 weeks ago. Since that time though, we've seen a radiologist who sent us to an orthopedic surgeon, who sent us to a rheumatologist. Although this has gone in a rather large circle, we DID discover the lesion on her tibia, so there is some good in seeing all those people!
3. Dr. Aken says she is 90% sure that Lia has rheumatoid arthritis. However, there is still that "mass" behind her left knee cap that we're not sure what it is. Possibilities listed to us: Calcified joint tissue, a hemangioma, or something much worse which we hope it is not!
4. Here's the plan: We are going to treat Lia as if she has JRA (juvenile rheumatoid arthritis) and keep a watch on the mass. Starting tonight, she is on Naproxen to help with pain and swelling. Within the next couple of weeks, we are meeting with Dr. Spencer (opthamologist) to see if she has any joint swelling in her eyes. If she does, this would further confirm arthritis, as many JRA children have eye-joint swelling.
5. In October, we start steroid injections. One in each knee, and a possible third one in the "borderline" ankle. The injections will be done in St. Paul at Gillette Children's Hospital under full anesthesia. Major bummer, but worth it as long as my girl is feeling better! The injections will reduce arthritis swelling very quickly, which is when that left knee comes back into play. If the swelling goes down with the shots, great! That means the mass was probably calcified joint tissue.
5. What happens after steroid injection if left knee is still swollen? Well, then we need to take the next step, which would be a scope (minor surgery) of her knee to figure out what in the word is going on in there.
So, in summary, she probably has arthritis. We are treating for arthritis, but watching that left knee closely. I hope all that made sense. It was so much information to take in.
I'm so glad that we at least have a "plan" and that we are taking steps to get all this sorted out and taken care of. Does rheumatoid arthritis suck? Yeah it does. Could this possibly impact aspects of her life? Yeah it could. BUT, I keep reminding myself that 1) There is no open heart surgery involved 2) No 30+ day hospital stays 3) No bypass machines, ventilators, collapsed diaphragms, chylothorax, addiction to/withdrawal from pain meds, or occupational therapy and I have handled ALL of those, so I can handle this too!
So, welcome to Team Lia, Dr. Aken! You are going to be a great addition to the long list of other specialists we already see. As Lia's medical team continues to grow, I continue to be in awe of the awesome God we serve. I am humbled at the continuation of answered prayers and grace God has shown to me and my family.
And with that....I'm going to bed. I have 23 other babies who need me back and focused on them tomorrow.
Minnesota--I'm not coming back until October 15th. I won't miss you.
A special thanks to my mother in law, Diane, who drove down last night so she could be here with Jack this morning while we were gone and take him to school! Also, a big thanks to my parents, and Jeremy and Amy, for all the help with transporting Jack around to daycare, school, home, etc., feeding him dinner, and being something "fun" for him while we've been so focused on Lia. I had flashbacks to Kansas City over the last couple weeks, and how terrible it was only seeing him on the weekends for weeks, and relying on my parents and in laws to take care of him for that incredibly challenging month-long hospital stay. Handing off Jack to different people and relying on all of you to get him where he needs to be while we focus on a different child is a hard thing for a mom. I'm so thankful to everyone who is willing to help keep his schedule as normal as possible.
5 am came early this morning as we got up and headed back to Gillette Children's Specialty Clinic. We didn't even bother getting Lia ready, just tucked her into her car seat still in her pajamas, and headed north. Again. We met with Dr. Aken a pediatric rheumatologist. She spent A LOT of time talking with us about Lia's symptoms, her (extremely long) medical history, our family history, and then gave Lia a thorough "range of motion" physical, testing all her joints,which was really interesting to watch. Lia was so well behaved. I was so proud of her. She did everything Dr. Aken asked her to do, which even included running up and down the hallway, and bending her hips, knees, elbows, wrists, shoulders, in all sorts of directions.
I'm going to try and sum this up the best I can. Here's the rundown.
1. Turns out not only is her left knee swollen, but also her right one. There is fluid on it also. I had no idea, because I always paid so much attention to the left knee and thought the right one was "normal" looking. Oops. (My poor poor baby!) In addition to both knees, her right ankle is "borderline" (doctor's words) swollen.
2. What can you conclude when more than one joint is swollen? Rheumatoid Arthritis. Do I sound like a broken record? That is the original diagnosis given to us 3 weeks ago. Since that time though, we've seen a radiologist who sent us to an orthopedic surgeon, who sent us to a rheumatologist. Although this has gone in a rather large circle, we DID discover the lesion on her tibia, so there is some good in seeing all those people!
3. Dr. Aken says she is 90% sure that Lia has rheumatoid arthritis. However, there is still that "mass" behind her left knee cap that we're not sure what it is. Possibilities listed to us: Calcified joint tissue, a hemangioma, or something much worse which we hope it is not!
4. Here's the plan: We are going to treat Lia as if she has JRA (juvenile rheumatoid arthritis) and keep a watch on the mass. Starting tonight, she is on Naproxen to help with pain and swelling. Within the next couple of weeks, we are meeting with Dr. Spencer (opthamologist) to see if she has any joint swelling in her eyes. If she does, this would further confirm arthritis, as many JRA children have eye-joint swelling.
5. In October, we start steroid injections. One in each knee, and a possible third one in the "borderline" ankle. The injections will be done in St. Paul at Gillette Children's Hospital under full anesthesia. Major bummer, but worth it as long as my girl is feeling better! The injections will reduce arthritis swelling very quickly, which is when that left knee comes back into play. If the swelling goes down with the shots, great! That means the mass was probably calcified joint tissue.
5. What happens after steroid injection if left knee is still swollen? Well, then we need to take the next step, which would be a scope (minor surgery) of her knee to figure out what in the word is going on in there.
So, in summary, she probably has arthritis. We are treating for arthritis, but watching that left knee closely. I hope all that made sense. It was so much information to take in.
I'm so glad that we at least have a "plan" and that we are taking steps to get all this sorted out and taken care of. Does rheumatoid arthritis suck? Yeah it does. Could this possibly impact aspects of her life? Yeah it could. BUT, I keep reminding myself that 1) There is no open heart surgery involved 2) No 30+ day hospital stays 3) No bypass machines, ventilators, collapsed diaphragms, chylothorax, addiction to/withdrawal from pain meds, or occupational therapy and I have handled ALL of those, so I can handle this too!
So, welcome to Team Lia, Dr. Aken! You are going to be a great addition to the long list of other specialists we already see. As Lia's medical team continues to grow, I continue to be in awe of the awesome God we serve. I am humbled at the continuation of answered prayers and grace God has shown to me and my family.
And with that....I'm going to bed. I have 23 other babies who need me back and focused on them tomorrow.
Minnesota--I'm not coming back until October 15th. I won't miss you.
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| Jack and Grandma Diane. He got to eat a special breakfast out with her this morning and got in lots of 1:1 play time. He loved every minute of it. |
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| My girl. The living definition of resilience. |
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| Showing off her fancy hospital shorts. |
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| Um Mom, this is taking FOREVER. Can we go now? |
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