River: an update

(I had every good intention of posting this almost a month ago, but Blogger ate my post and I was too annoyed to sit down and type it all out again until now. :) My whole point in doing this update then was because we were being sent to a new doctor at the Movement Disorder clinic. One of River's doctors felt he had a disorder called dystonia and referred him to this clinic. Dystonia is characterized by a lot of involuntary movement and abnormal postures. This would have been caused by the brain damage he suffered from his brain bleed in utero. The referring doctor thought he may need to go on meds to treat the dystonia and the doctor he sent us to is the head honcho of neurology at CH. The great news is that the dystonia doctor DOES NOT think River actually has dystonia and therefore will not be treating it. There are various reasons he feels River doesn't fit the mold for a dystonia diagnosis and he feels River's occasional involuntary movements are reflex issues he has due to damage on his brain. All in all, great news! We loved the new doctor, but it certainly didn't hurt our feelings to hear we do not need to return to him. :)

I suppose this is a long time coming. I'm so grateful to have people so often asking me how River is, but the answer to that is usually much more than I can belt out in passing at Walmart or school or wherever I may run into you. I usually just say, "He's great!" because he is, but I realize it's a bit more complicated than that. So how is River doing?

Well, he's great. (Sorry, couldn't help myself.) Truly he is and we are so thankful for his health. I know some people may not get that, but we realize how much worse we could have it and we are thankful that CP aside he is a healthy child.

Vision- The million dollar question is can he see. Yes, he can... we're just not sure how well. I recently learned that with cortical visual impairment (which is River's eye diagnosis and a fancy way of saying 'we don't know how well he sees') what River sees can vary from day to day. That makes so much sense to us as we often have days where we feel like he will track us or an object or make eye contact and other days where you can be right in his face and he will still jump out of his skin when you say something to him. He had a recent eye exam at school and the DR suggested we go back to our vision specialist for a recheck because she thinks his vision may have slightly improved. That is on my list of things to do so stay tuned. :) When River was an infant he was diagnosed with nystagmus (where the eyes constantly roam side to side, up and down). It's something that is NOT supposed to improve with time, but if you've been around River at all in the last year you know his eyes are ten times better at focusing than what they use to be. I would go as far to say his diagnosis of nystagmus is now null and void... and that is just God working. 

Hearing- River continues to seem to have super power hearing. ;) There were so many times when we was an infant that I wondered if he could hear at all (not to mention he failed his first two hearing tests due to fluid on his ears) so this is such a blessing. When he finally passed a hearing test (in November of 2011) he did show a slight delay in brain stem response on one side, but since then has had THREE completely normal hearing screens with perfect results. Praise God!

Cognitive- We continue to be blessed by signs of typical cognition in River. It's always interesting to be thankful your child has learned how to manipulate. :) He is following simple commands such as "No bite", "Open", and has recently started following commands in PT like "River, pick your head up three more times and we will do something else." He is able to show a preference toward toys, music (seriously- he is so my kid), people, and foods. He may not be talking yet, but he has certainly learned how to get the point across when he is not happy or wants something else. He understands far more than you would think he could or would and I am so guilty of often being surprised at the levels of cognition he shows. 

Speech- Not talking at this point, but babbling a lot. Making the same sound pattern over and over when asked if he wants us to turn the music on. Saying something that sounds extremely close to "yeah" and "momma". He is sometimes so loud that I have to cover his mouth with my hands so someone can hear me. In turn he just yells louder. Typical two year old. We are in the process of getting into an adaptive technology clinic and get River a communication device that can be adapted for his wheelchair. 

Eating- I'm guilty of forgetting exactly how far River has come in taking food by mouth. Often when one of therapists asked how it is going I say, "Eeehh." Then they watch him eat and are so shocked at how much better he is doing. Does he like it? No, we're not there yet; but he is definitely tolerating it and that is a far cry from where we started. He prefers things he can crunch and chew so we don't do typical baby foods with him. Lately we have tried poptarts, mini candy bars (thank you, Halloween), oatmeal with fruit chunks, pasta, scrambled eggs (with salsa, with ketchup, and with grape jelly). My new goal is to really buckle down with this eating and be consistent because I feel like that is what is going to help him figure it out. We're just struggling finding the time to fit it in consistently with everything else we have going on. 

PT/OT/Therapy- It's easy here too to forget how much progress River has made. Progress is just so S L O W and that's hard when you want to see your child making leaps and bounds. He does have better head control (though not total head control). He can walk in his gait trainer, but we cannot figure out why he won't do it consistently. We've felt like he was on the cusp of rolling for months now and still do, yet he isn't doing it. He doesn't seem to have interest in doing it on his own. We're not sure if this a muscle thing, a tone thing, or a 2 year old stubborn thing. He is not terribly consistent in any of his therapies- he may do something great one week and not do it at all the next. We just need to figure out WHY.

Docs:
GI- Though he still throws up on occasion we are in a much, much better place than we were a year ago. We love our (newish) GI and are so grateful to have found him. River is currently taking Prevacid and Axcid to control his reflux. He does 1 four once feed in the morning, and a six ounce feed for lunch and dinner. At night he gets about 17 ounces over his kangaroo pump. He is gaining weight well... in fact at his last feeding therapy appointment they reduced his feeds because he was gaining a little too quickly. 

Neurosurgery- We will see our neurosurgeon once more this summer (after going to 12 month appointments) and then we will be discharged from his service. Considering that at one point it was thought River would need a VP shunt placed for life we are extremely blessed and grateful to be 2 years out with NO SHUNT and about to be discharged with no need to be followed. Praise God!

Physical Medicine/Rehab- We see this doctor this week and I am anticipating med changes (not looking forward to that), possibly a second round of Botox, and maybe knee immobilizers. We're also going to see where we stand with afo's and discuss being fitted for a new pair (by a different company given all the issues we had with the last company). I will try to update about this soon. 

Thanks for caring, listening, reading, praying!