Today I'm home from work with a nasty stomach bug. Fortunately my mom is still watching Landon for me and my step-dad drove Carson and Austin to daycare and so I'm able to stay in solitary confinement to avoid passing this to everyone in the house. I've been out of sick days since December and so it is another unpaid day off, but at least it gives me a chance to update on what all happened yesterday in a timely manner.
First, Landon saw his pediatrician yesterday morning for his 7 month checkup. He is up to 20.5 lbs and 28.5 inches. Not surprisingly, with all of the issues we have had since his surgery he has dropped from the 90th percentile for weight down to the 70th. The good news is that his length has only dropped to the 88th percentile, down from 90th as well, and so he is still growing well despite the setbacks.
Next, we had to address Landon's development. I knew that he was starting to fall behind as he had recently missed all of his 6 month milestones. Already knowing that didn't make it much easier to hear though. When the nurse comes in she evaluates Landon using the scale for typical babies. Preemies have an adjusted scale, as do children with certain conditions such as Down syndrome, but there is no adjusted scale for babies that survived 35 minutes of cardiac arrest and have undergone many hours of general anesthesia and two major surgeries. Landon is still expected to fall on the "typically" developing scale. I had to answer "no" to all of the questions regarding his development.
Having had two other children go through well-baby checks, I can already tell that our pediatrician treats Landon differently. In addition to just looking him over, checking ears, throat, genitals, etc. he also does a much more thorough physical examination. He checks all of Landon's reflexes, puts him into different positions to check his strength, and does several tasks to see firsthand how he is doing. He was concerned with Landon's tone. He said that he is very "floppy" and said that he is going to have to add "developmental delay" and "hypotonia" to Landon's chart. Developmental delay is self explanatory, and I was expecting that, but the hypotonia caught me by surprise. Having worked with the populations that I have, the first thing that came to mind when I heard "hypotonia" is cerebral palsy. It means low muscle tone, and can be synonymous for cerebral palsy. Fortunately we were already heading to St. Louis for our afternoon appointment with neurology, which couldn't have been better timing.
After the unsettling checkup in the morning, the neurology appointment was very reassuring. The neurologist was much less concerned than our pediatrician. She said that he only has mild hypotonia in his extremities, but it is more severe in his trunk. She was encouraged by how alert and social he is. Landon successfully completed several tests with blocks. He struggled with passing them from hand to hand and lifting his arms above his shoulders. He also struggled with sitting up on his own, but for short periods of time he can balance hunched over and he is able to reach and pick up objects while doing so.
Overall, she said that Landon is functioning at a 5 month old level. She wasn't very concerned with his tone, she said that after what he has been through it would be much more concerning if he was hypertonic. She felt that it is likely a combination of everything- long hospital stays, 8+ hours of general anesthesia at a young age, being critically ill when he was a week old- that are causing his delays. Everything she said made sense. If most of his issues are in his trunk, that explains why he was keeping up with his milestones until recently. Sitting up was the first milestone that he missed, and so that goes right along with what she said.
So the next step- what do we do about it. A 2 month delay isn't exactly devastating, especially considering what Landon has been through. After all, this is the child that another member of the neurology team once called "Superman" because he could move his extremities and had his newborn reflexes back- even before they saw a perfect MRI. Just like our other boys, all I want for Landon is to be the best that he can be. So we are going to start physical and occupational therapy. I have contacted early intervention and we are meeting on Tuesday to go over financial and insurance information, and then soon after Landon will be evaluated. If he exhibits a 30% or more delay, he qualifies for services and they will come to our home to work with him. If he doesn't qualify, I have a prescription for OT and PT which I can use to get him therapy privately. The only reason that would not be ideal is due to the fact that we live in the middle of nowhere. The closest place that sees babies is 40 minutes away, and so that would be complicated with my work schedule. But we will do what we have to do. In July we will return to see his neurologist and re-evaluate how he is doing.
Last but not least, is the best part of going back to St. Louis. We were able to see the doctors/nurses/physician assistants/etc. that saved Landon's life. I had written and told them we were coming, with every intention of getting there at least half an hour early to go up and visit. But at the last minute John decided to go in to work, since his sick time is not exactly plentiful right now either, and so we were really rushed to get there by 4:30. We signed in in the waiting room at 4:30 exactly, and before I even sat down one of the doctors taking care of him the night that he coded on the floor was in the waiting room looking for us! I am thoroughly convinced that one of the main reasons that Landon survived was because he had so many people taking care of him that truly cared for him. CPR is very rarely successful after as long of a duration as Landon received it, but they didn't give up. And because they made the split second decision not to give up- even knowing how poor the prognosis surely was- Landon is still here having a wonderful life and making us so proud. Even though I send pictures every few months, it was great to be able to visit. Landon smiled and laughed at everyone. We went up to the 8th floor and saw many people that had been there "that night"- as it is referred to. Although we come to St. Louis often to take the boys for fun days, it is always on the weekend when many of them are off work. The best part of continuing to go in for neurology appointments during the week will be to visit! Since we will be going back in July after Landon's first birthday, we are going to work so hard so that maybe he will be able to walk in and actually say "hi." If early intervention asks what our goal for Landon is- that is it. For him to be able to walk in and greet everyone that saved his life, and to eventually be able to tell them "thank you."
No comments:
Post a Comment