Off Sildenefil, still cruising & having fun :-)

Since it's been so long I felt I had to post a quick update. We've weaned Ian off of Sildenefil, yeah! We are slowly chipping away at his med list, which I believe is going to significantly benefit him. Who knows what all the side effects of these meds are.  It's also such an expense, not nearly as much as if we didn't have insurance, but it will be nice to have one less a month. And he seems to be doing really well!

He's got an MRI coming up next Monday. This is to check his brain growth and to also look at his lower spine. They are trying to make sure he doesn't have tethered cord issues that sometime come with M-cm. And the main concern is Chiari Malformation. There hasn't been really any signs that he's got issues from these which makes us really hopeful. Although he's been laying his head down quite a bit. Not sure why, might just be a phase but really anxious to take a look at the study. Unfortunately we will have to stay the night in the hospital after the study just to have his O2 monitored after anesthesia. 

The following Saturday he has an overnight pulmonary sleep study. We've been taking him off here and there and checking his sats which are always great. We really have high hopes for the study but I don't want to jinx him as it seems I did before. So I'll just wait and see.

We see the Neuro Opthamologist tomorrow to see how the progress with putting the drops in the left eye is going. Dr. Borchert has scheduled his strabismus surgery for July but will give us his opinion tomorrow. His eyes seem to go back and forth as far as working and not. He's got both really good and really bad days.

We are still awaiting a change to NAPA Center for his therapy although continuing with our regular PT and OT, whom we love. It will be sad to change, but only having half hour sessions just doesn't seem like enough. They are just getting going and then have to leave. So sad. 

We will finally begin a speech therapy session using The Hanen Method. It's a 10-12 week program which includes me going to sessions on my own and the therapist coming to our home recording me interacting with Ian and giving me feedback from there. Should be interesting. Also awaiting a new speech therapist to begin at NAPA whom is supposed to be amazing. We are supposed to get worked into her schedule. 

In general, we have been having an amazing time with our sweet little guy! We've traveled to visit family and Mike and I actually were able to get away with a group of friends for a few days in Mexico while Ian and Lila stayed with my parents. Really nice! 

He's been climbing on everything, just as he should. He's still not walking completely on his own but so confidently cruising it's really impressive. I'm actually not in a super rush for him to walk, except for the fact that my arms are having trouble always carrying his 35 lbs! I do want him to be a confident walker when he does go on his own so he's not falling so much. 

He is also finally beginning to be more interested in interactive play. Like rolling the ball or a car back and forth. He's really into it! So cute! 

Just started a "typical" Mommy & Me music class at a local place in Westcheter. We started in the later half of the session so we'll only get a handful of classes in but it's a start. It's so fun to be in that kind of class with him! It's only with 3-4 other children but I'm trying to keep him within a safe germ distance and sanitizing during the whole class. He seems to really dig it!

Everyone who meets him seems to fall in love. Mike, Lila and I are all so in love with him, and he in love with us. He's just so yummy! It completely overwhelms me with joy to watch the way him and Lila interact. It makes my world more complete. 

I'll update again after all the studies. Cross your fingers they go well!