Jaxon Update (Tis a Long One Folks)

Several weeks ago I put up a post about Jaxon having some issues with an abnormal blood test and needing to be evaluated by Children's. I meant to follow it up and apologize I kind of left it hanging. Here is a little more details on what's going on since we know a little more now.

At Jaxon's 6-month well-child appointment, I brought to his pediatrician's attention that at that time, Jaxon was not doing some developmental things gross motor wise that I thought he should be. (Keep in mind I've worked with children with disabilities for several years and I studied child development in college for two years, so am hyper aware of these types of things. Almost to a detriment. The pediatrician did mention that most parents wouldn't have even brought these things up or be concerned.) At that time, she wasn't very concerned, but referred him to a physical therapist to double check, and asked me to bring him back in 6 weeks to check his progress. The physical therapist scored him on his development and he was ahead cognitively and fine motor...and right on 6 months (which he was at the time) for gross motor. However, she did want me to check back after 6 weeks as well because she was afraid he could be one of those kids who fell through the cracks. Some of the issues we were seeing we thought was due to his reflux and the fact that tummy time has been a challenge because of it.

Skip 6 weeks forward, and Jaxon had improved a lot. The things I was concerned about he caught right up, except for the fact that he refused to push up with his arms still. When I took him back to the pediatrician, she was happy with his improvement but did notice what she thought could be a bit of low tone in his upper arms. To cross every "t" and dot every "i", she wanted to run a few tests. One of these tests caught me off guard a bit...a test to check his CK (Creatine Kinase) levels which determines whether or not a child has muscular dystrophy. In case you don't know, muscular dystrophy is kind of a hefty diagnosis. One that would change our entire lives. I thought it was a bit extreme but went along with it.

The next day I found out that his CK levels were slightly elevated. Normal would be 195 or less and his was 295. It sounds like a big elevation, but it actually is very slight. Good news: if it was muscular dystrophy it would have been over 15,000! So it's not that...praise God. Bad news: we don't know why it is elevated. Because of this, she referred him to Children's hospital to be further evaluated.

Enter freaked out mother. Mostly because no one could tell me what an elevated CK level could mean. Given, I was thankful it wasn't muscular dystrophy, but who knows what it COULD be. It is hard to not know. As a mother you don't want your child to have to suffer at all.

Encouragement soon followed. Jaxon's physical therapist was super pleased with Jaxon's development and sees him still on track with his gross motor development. She calmed my fears that she has worked with many children with muscular diseases and did not see those warning signs with Jaxon. In fact, she didn't think he had low tone at all. She tends to think this is a mild sensory issue (the palms of J's hands and feet seem to be more sensitive and he is resistant to certain things because of this.) This is something that is very fixable. Jaxon CAN do many of the things he needs to be doing, but is more resistant to doing them. We are going in on Thursday to address more of this.

The reason I post this now, is that Rob and I are going to be taking Jaxon into Children's Hospital (outpatient) tomorrow to meet with a neurologist to make sure we cover all bases included the elevated CK levels. I did get some more information from the nurse there. She said that whatever it was, it seems to be mild. She also said that the elevated CK level could simply mean he had an infection that day (which he did have a cold.)

I feel a bit better about the whole situation now than I did. Jaxon seems to be progressing nicely, and we've had positive feed-back. I am a bit nervous about the appointment tomorrow so would still ask for prayers. Pray for peace and the dr's wisdom!

Either way, God is in control and we place our trust in him. We dedicated Jaxon to the Lord last week and that includes our acknowledgement that Jaxon is His and He knows what is best for Jaxon.

Thanks for all your prayers and support and I will update after we know more tomorrow!