2 for 1 deal

I didn't post an update in August because I was a little behind as the end of the month approached, so I figured I'd just wait until the next month. SO, we've got a 2 for 1 deal encompassing August and September.

Beckett's coordinator through Washington's Early Intervetion program came to check in with us and update his IFSP (Individualized Family Service Plan- basically an IEP for kids not in school yet). We went through all his original goals we had set back in February when he was initially evaluated, and discussed what his new goals would be for the next six months in terms of gross motor, fine motor, speech and feeding. Some main goals he had included, sitting independently, rolling over, vocalizing wants, using open hands for play, and eating solids by mouth. Going forward, we will continue to work on vocalizing wants, using open hands for play, eating solids by mouth, and we will move on to working toward taking independent steps. 

We've been working on Beckett's startle reflex, and his fall reaction a lot lately in therapy. He's gotten to the point where he can stand at the couch, or ottoman, and even wants to bring his legs up to try and climb, but I try to always be right behind him if he's not in his gait trainer because he can still fall from standing (we are also working on sitting from standing). If we aren't playing with toys in the play room, or doing stuff in the morning in the kitchen, I try to have him always on his gait trainer. Not only is it good for him to be working on his walking and standing skills, but it's also the safest place for him to be that gives me the freedom to not have my hands on him.

We're still working with a device for his speech, working on him touching the screen with two fingers rather than a whole hand slap so he can one day point to the image of what he may want...and it's a work in progress. He's making his normal sounds and repeating his "ah" noises with us.

Beckett's feeding therapist had wanted us to get Beckett on the medication to stimulate his appetite, which I have felt apprehensive about from the get go. I had called the pediatrician to get an appointment to discuss it further (since his feeding therapist can't prescribe medicine), and had to wait a few weeks for that appointment. When it came time for our tele-visit (didn't need to go into the office for a discussion of where to proceed with the medicine), his pediatrician talked to me a little about the medicine and what it could do for him. We briefly talked about some pros and cons of starting the appetite stimulant...knowing we'd have Beckett's 18 month checkup the following week. Ultimately we decided to have a weigh in at his check up, see his growth and make a decision at that point.

At his 18 month check up, he got measured and weighed and is weighing 25 lbs which is the 50th percentile. His weight looks great, his weight and height growth are right where they need to be, so we decided to hold of on the Cyproheptadine for now. We talked about his lack of sleep and if there was any help she could offer. She suggested trying Melatonin at night, so we started implementing that. It knocks him out at the beginning, so what used to take up to an hour at night of getting him into his bed, now only takes about 10 minutes. However, it does not help him sleep all night, so we're still pretty sleepless over here! He got his shots and we headed on our way. 

We've been continuing to work with his vision teacher on a regular basis. She always gives us great ideas of ways to incorporate vision into play. He tracks really well, but still crosses his eyes often. It can be funny to watch because he'll follow me around with his left eye and his right eye always takes awhile to catch up. He hurt his eye pretty bad in therapy this month, so glasses will definitely be something we talk with his Ophthalmologist about in November when we see her again. 

We met with two GI doctors. These appointments were to discuss the appetite stimulant and whether it will be good for him to try. The first one was here in Spokane. We spoke a little bit about his history as far as his diet goes, and what he's currently eating. The doctor didn't give me a whole lot of information but said she'd write the prescription and we could decide what we wanted to do. It felt like a waste. The second GI doctor we saw, is based on Seattle so we had a Telehealth appointment with him. This doctor is one that all of the therapists rave about so I was hopeful it would be a better experience. He seemed to come into the meeting, already having read up on Beckett's rather extensive chart. We went over a few other details so he could get a better idea of exactly what we were feeding him, and where we are. He praised him for how well he has developed physically over the last 9 months, which goes to show how crucial early intervention has been for him! He then went over the medicine, and exactly what it would do which was super helpful. He pretty much said with his experience, this medicine won't work with getting Beckett to eat solids. Since he's got a lot of things happening neurologically, his body has not made his swallowing and oral skills a priority, so this is more than likely not going to be a home run for him. But if we don't try this to stimulate his oral functions, we have run out of things to try...so we've decided we need to try it out. As the second GI doctor said, there's a reason why a 20 month old isn't eating solids, and he and I both believe it's because of his oral delays which are obviously caused from the Lissencephaly.

We've been at a standstill with feeding therapy. Beckett gets his nutrition from his formula that he drinks. It has helped tremendously with his growth, but its the only thing nourishing his body. He's got a pretty severe oral delay, and that means the only thing he can put in his mouth safely is a puree. Here we are at 20 months old and he doesn't bring anything to his mouth, so when it comes to eating, I have to put everything into his mouth. When we do sit at the table to eat, he has no interest in food. Sometimes he may eat 2 Tbsp of food, and other times he doesn't want any spoonfuls. Since we haven't made much progress since moving here, the last ditch effort is to get him on the Cypro. If this doesn't work, then we will continue to try and give him food, in hopes that one day he wants to eat with his mouth. We got the prescription and started on a dosage of it. It should start working and make him very hungry within 2 days, so after 5 days of no change, we decided to up his dose. He is now on the highest dose for his weight, and if this doesn't work in the next couple days, then we know that is was not a success, so here's to hoping!

My mom came in town for a few weeks, so Regan and I went to Idaho and spent the night away. I was anxious to say the least as it was my first time ever being away from Beckett for the night, but we all survived. September 8th was Lissencephaly Awareness Day, so we did our 5k for Beckett, and it was great to have my mom be a part of it! A few days after my mom had left, we received an interesting thing in the mail (which you may have seen me put on my Facebook). It was a large envelope that said "do not bend" and I immediately thought it was a diploma...I don't even know why. I opened the letter and saw it was a Proclamation from the Mayor of Pearland recognizing September 8th as Lissencephaly Awareness Day in honor of Beckett and it was so special. We are really looking forward to moving back to Pearland and planting roots for our boys, in a town that not only feels like home to Regan and I, but now will hold an even more special place in our hearts. 

Other updates: Lincoln started school after Labor Day, and is loving it. He doesn't bat an eye when he walks in, but is so excited to see me and come home, so I couldn't ask for a better attitude. He's such a big boy these days. It's less than 3 hours, and by the time Beckett has his therapy every morning after drop off, there's really not time for much before Beckett takes a nap and then pick up, but Lincoln is learning and it's so convenient behind our backyard. Beckett has turned into quite the little jokester these days. He likes to do things you tell him not to. If he sees a bicycle, he's going to find a way to get to it and grab onto it, whether that's in our own garage, or the garage of a neighbor. It smells like fall up here, the leaves are changing and mornings are pretty cold (40s)! It's strange because I'm used to this being November/December weather, but I know those will be quite different here! We're heading into the fall, and ready for a visit from cousins and my mom next month!