Phoebe did wake up still crying as usual this morning. Though maybe one difference about Tuesday (yesterday) was I was in the room when she woke up and maybe she was just extra happy to see me? Today, Jason went in to wake up the girls to get ready and she was immediately fussy. I went in to try and comfort her too, but she was still upset. I changed her diaper and and then was going to put on pants for her to get dressed. She cried really hard and it actually sounded like she was saying ow about moving her left leg and would not bend her knee for me to get her leg into her pants!!!!!!! I was kind of freaked out by that, so I just stopped and went and put her in the high chair for some food. Fortunately the heater was on, so I wasn't worried about her being too cold.
Meme said she had a not so great day again, not wanting to walk a lot. In fact, I feel like maybe she is getting worse!!! Before, you know, I was just kind of gradually starting to question if something was off, then starting to feel like something was wrong, and now I feel like there is NO DOUBT she is in some pretty serious discomfort/pain!!!! Wahhhhhhh!! This is seriously bad, guys! It is heart breaking to see her just hobbling around. I feel like it's like she can barely walk any more.
I talked to Chuck from the orthopedic's today. Of course, the girls were being noisy and Cordelia was demanding I read her a book when I tried to be one the phone. 😓😓 Anyway, he confirmed that the MRI request is already underway and the insurance will contact us. I have no idea how much it is going to cost, I'm scared to find out! I feel like our plan doesn't have that huge coverage, but Jason's work has a medical spending account fund attached to it, but I'm worried this will wipe it out real quick and it's barely February. I don't have good expectations. Just more evidence that the world of health insurance is evil.
Phoebe took her afternoon nap. After she got up, she got her shoes and asked to put on shoes and go outside. She wanted to sit in the toddler powerwheels, but didn't drive it anywhere. When I helped her sit in it, at one point her leg was very stiff, but she settled eventually. Cordelia had a meltdown about wanting to go first, even though Phoebe had requested it by saying "vroooom". I made her wait and ask for a turn. Then I also took Phoebe around in the push bike a bit. She did very little walking, seems unsteady.
Phoebe ate a ton of dinner, much more than usual. One difference was I didn't give her a snack after her nap because they'd had one before she went to nap. She ate zucchini and chicken, which she has refused for a while... I think hunger played a part in being less picky.
When I put her to bed, for putting on her pjs, she again was very stiff and said OW about me trying to bend her left leg to get it into her pants! So sad! She also had two minor, minor falls today, which is not a huge deal for a 18 month old, but of course, I notice because now I think they're related.
But then when she was being put to bed, she escaped from her bed and took off down the hall, the sneaky baby!! Motivation is a huge factor in what she is willing to do. :)
Jason is speculating the weather could be affecting her. So hard to say, it seems like it was getting warmer, but at the same time, it is going through a lot of changes throughout the day, like starting cold and then warming up and then cooling off! I don't know!!
Anyway, we see Dr. Jenn on Friday for her well-baby and in the meantime, continue Motrin.
I was hoping there was some sort of app that would let me post video from my phone right to this blog but it looks like i will have to put it on youtube. Hmmmmm. We'll see. The idea behind making this a blog was that I wanted a place to consolidate videos and my log of observations, but adding an extra step is gonna be annoying. Hopefully I can figure it out.
Wednesday, January 31, 2018
Tuesday, January 30, 2018
The Whole Backstory Post
This blog is intended to track Phoebe's issues with walking and likely juvenile arthritis. She is 18 months old tomorrow.
We have had an ongoing concern about Phoebe's walking. After Thanksgiving, she had an ear infection and I was feeling she was very unstable in her balance. She got her ears rechecked and I was convinced she would still have the ear infection, but the doctor said her ears were clear now. I was very surprised since she did not seem better and was often fussy. Some weeks later, in mid January, she had a very bad weekend and seemed to be having such a hard time walking. Like, she was back to cruising, but she would hold onto things and not want to take a step without whimpering and crying, or asking to be picked up.
I asked Jason if he thought she was in discomfort and he initially said he thought she was just a top heavy baby, with a big belly and a big head, so of course it was hard to get around sometimes. But then I conferred with Jason's mom and once I said something, she also agreed that something was off. I made another doctor's appointment. Doctor Jenn said her ears were still clear. I tried to describe how Phoebe was off balance sometimes and didn't want to walk, but that it was not 100% of the time. I asked if she thought she could have a small fracture, but she said that a broken bone would probably be a consistent complaint for a little one. She moved Phoebe's legs in all directions and said to take some video of what I was seeing and we could discuss it at Phoebe's 18 month check up (2 weeks away) and then if I was still concerned, she could refer me to a physical therapist. Jason's mom was very surprised there was no ear infection and was very firm, "Something is wrong." It felt good to have someone backing up my mom gut, but I still wasn't sure what I was seeing and how much was toddler toddling and fussing and if something was seriously causing her discomfort. We were starting to feel she was worse in the mornings, which made no sense, given that she'd sleep all night, so I figured getting out the door was usually the problem....
I took some videos over the weekend and saw that Phoebe walked at times without bending her left knee, instead shuffling her leg from the hip. Not what I considered a normal toddler gait. She is growling and roaring adorably because we are playing with plastic lions.
Instead of waiting, I made another doctor appointment. I also took another (sad!) video of her cruising and crying when she'd try to take steps.
Doctor Jenn was much more concerned over the video evidence. She sent us for xrays, which showed no broken bones. The next day we had labs done, checking for a scarily named toxic/transient hip infection. Labs showed some minor inflammation markers, but otherwise normal.
Next day after that, we saw an orthopedic. (If he didn't have answers, our next stop would be a neurologist and that was starting to freak me out!) The ortho and his team met Phoebe and gave her a lollipop when she was getting upset about exams. That worked! She ate the whole thing without biting it! The doctors said they did not think that my CMT was an issue (I was worried, going to see an orthopedic takes me back to the time of foot-braces!), but instead supsected that Phoebe has juvenile/children's arthritis. I did not know that was a thing, but it is. So she probably has inflammation in her knee. He said her knee felt full to him, but he didn't determine if it was just inflamed or fluidy, just "full". The biggest kicker for me, ding ding ding, was when they said a symptom was that it is WORSE IN THE MORNINGS. That is exactly what we are seeing. He said to do Motrin all weekend and call back on Monday. Next steps would be seeing a rheumotologist, more labs, or an MRI.
Here is Phoebe walking at the orthopedics:
Saturday we did Motrin 3 times a day. She was the same in the mornings and better in the afternoon. We went to Ikea and she wanted to explore. She tried to go faster, but she fell on her face, bumping her forehead (nothing serious) two times.
Sunday she was so fussy all day. It was after noon when she probably even took her first step. I was getting pretty concerned.
Monday was a typical wake up, crying and unhappy and not walking. I called the ortho and talked to Chuck, the nurse assigned to our case with the weekend update that I hadn't seen a huge improvement. He took down my notes and said he'd call me back. Didn't get called again until Tuesday, today. So I guess the orthos are concerned that we didn't see change with the anti-inflammatory meds, so they think we should do the MRI, which was the last-resort, as she will have to be put under. (aaahhhh) So now it is time to contact insurances and it will probably be in 1-2 weeks if nothing changes.
Anyway, I will have to keep a better log of what I'm seeing, because today was the first day that Phoebe didn't wake up crying. But I don't know if that means anything or not! Obviously, we should still move forward on the MRI, but I hope Phoebe will do a bit better. :(
ANyway, this is a new harrowing part of parenting for sure!
We have had an ongoing concern about Phoebe's walking. After Thanksgiving, she had an ear infection and I was feeling she was very unstable in her balance. She got her ears rechecked and I was convinced she would still have the ear infection, but the doctor said her ears were clear now. I was very surprised since she did not seem better and was often fussy. Some weeks later, in mid January, she had a very bad weekend and seemed to be having such a hard time walking. Like, she was back to cruising, but she would hold onto things and not want to take a step without whimpering and crying, or asking to be picked up.
I asked Jason if he thought she was in discomfort and he initially said he thought she was just a top heavy baby, with a big belly and a big head, so of course it was hard to get around sometimes. But then I conferred with Jason's mom and once I said something, she also agreed that something was off. I made another doctor's appointment. Doctor Jenn said her ears were still clear. I tried to describe how Phoebe was off balance sometimes and didn't want to walk, but that it was not 100% of the time. I asked if she thought she could have a small fracture, but she said that a broken bone would probably be a consistent complaint for a little one. She moved Phoebe's legs in all directions and said to take some video of what I was seeing and we could discuss it at Phoebe's 18 month check up (2 weeks away) and then if I was still concerned, she could refer me to a physical therapist. Jason's mom was very surprised there was no ear infection and was very firm, "Something is wrong." It felt good to have someone backing up my mom gut, but I still wasn't sure what I was seeing and how much was toddler toddling and fussing and if something was seriously causing her discomfort. We were starting to feel she was worse in the mornings, which made no sense, given that she'd sleep all night, so I figured getting out the door was usually the problem....
I took some videos over the weekend and saw that Phoebe walked at times without bending her left knee, instead shuffling her leg from the hip. Not what I considered a normal toddler gait. She is growling and roaring adorably because we are playing with plastic lions.
Instead of waiting, I made another doctor appointment. I also took another (sad!) video of her cruising and crying when she'd try to take steps.
Doctor Jenn was much more concerned over the video evidence. She sent us for xrays, which showed no broken bones. The next day we had labs done, checking for a scarily named toxic/transient hip infection. Labs showed some minor inflammation markers, but otherwise normal.
Next day after that, we saw an orthopedic. (If he didn't have answers, our next stop would be a neurologist and that was starting to freak me out!) The ortho and his team met Phoebe and gave her a lollipop when she was getting upset about exams. That worked! She ate the whole thing without biting it! The doctors said they did not think that my CMT was an issue (I was worried, going to see an orthopedic takes me back to the time of foot-braces!), but instead supsected that Phoebe has juvenile/children's arthritis. I did not know that was a thing, but it is. So she probably has inflammation in her knee. He said her knee felt full to him, but he didn't determine if it was just inflamed or fluidy, just "full". The biggest kicker for me, ding ding ding, was when they said a symptom was that it is WORSE IN THE MORNINGS. That is exactly what we are seeing. He said to do Motrin all weekend and call back on Monday. Next steps would be seeing a rheumotologist, more labs, or an MRI.
Here is Phoebe walking at the orthopedics:
Saturday we did Motrin 3 times a day. She was the same in the mornings and better in the afternoon. We went to Ikea and she wanted to explore. She tried to go faster, but she fell on her face, bumping her forehead (nothing serious) two times.
Sunday she was so fussy all day. It was after noon when she probably even took her first step. I was getting pretty concerned.
Monday was a typical wake up, crying and unhappy and not walking. I called the ortho and talked to Chuck, the nurse assigned to our case with the weekend update that I hadn't seen a huge improvement. He took down my notes and said he'd call me back. Didn't get called again until Tuesday, today. So I guess the orthos are concerned that we didn't see change with the anti-inflammatory meds, so they think we should do the MRI, which was the last-resort, as she will have to be put under. (aaahhhh) So now it is time to contact insurances and it will probably be in 1-2 weeks if nothing changes.
Anyway, I will have to keep a better log of what I'm seeing, because today was the first day that Phoebe didn't wake up crying. But I don't know if that means anything or not! Obviously, we should still move forward on the MRI, but I hope Phoebe will do a bit better. :(
ANyway, this is a new harrowing part of parenting for sure!
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