Finding the right fit

Experience taught us to always get a second opinion. Not just for the opinion, but to find a doctor who will listen to you and work with you. But, I didn’t apply that to therapists.

For a while we received therapy from our state program, so we didn’t have a choice in therapists. Then when we recently went private, we just got the therapist assigned to us. We have now been doing speech therapy for over a year, nearly a year and a half, and have made very little progress. In fact, my little guy wouldn’t say ANYTHING during any of his 30-minute therapy sessions. But, after a quick chat with our neuro about the frustration of not having speech therapy covered by insurance, she made a call, wrote a letter and got us some coverage at the hospital’s rehabilitation center. I was appreciative, but it’s an hour drive each way, and I wasn’t sure it was going to be the best fit (being at a rehabilitation facility). But, after the initial evaluation with a pediatric speech pathologist… the same one who would actually treat my little guy, I was sold!

In one week, he has made more progress in speech than in the last year and a half… or really, since he was born. I really like that the sessions are an hour long, because he has time to warm up and work, versus just getting warmed up by the time the session is done. This therapist gets on the floor with him, she makes funny faces in the mirror with him, she crawls under the table with him, she helps him open and close doors, and she lets him run and play. He loves it. He babbles and tries to make new sounds the entire session, as well as at home! It’s AMAZING!  We have definitely found the right fit for him.

Now we’re going to get an OT and PT evaluation there.  The therapists can do a co-treat, which I’m really excited about.  We probably won’t do much PT, though.  He is taking gymnastics at a local gym, and the instructors there know his past and are doing great working with him.  He has made huge strides in his gross motor skills since starting the class.  This week, he held on to one of the parallel bars, and raised his legs to kick a stuffed monkey hanging in front of him.   He even held on to the rings, which are hard because they move independently.  These things are insignificant for most, but a big deal for him, since he really doesn’t use his hands much. It’s great therapy for a much better price tag!   😉



Feeling Thankful

A few days ago, with Zane’s 2nd birthday nearing, I started feeling the need to print some of our pictures to put in Zane’s baby book.   Looking through all those memories triggered a letter to our neurologist, and I thought I would share it here as well.

Dr. Von Allmen,

Tomorrow, Zane turns two. I can’t even believe it. Two! Our daughter is ten, so I know how fast time flies. But, it’s different this time. As I try to put pictures in his baby book, I feel so much sadness. Not only has time flown by, but this time we were robbed of so many precious memories. We missed out on so many smiles, so many giggles, so many splashes in the tub. We missed out on spaghetti sauce faces and dropped toys just to see how gravity worked. Instead of cute videos of silly moments, we have videos of seizures for documentation. Instead of pictures of new milestones, we have pictures of EEG’s in the hospital. We missed out on so many silly little things that most parents take for granted.

When he should have been gaining new milestones each day, we watched the milestones he had already achieved fade until he had none. None. At eight months old, he was like a newborn. But, his body had grown, so taking him up and down the stairs or giving him a bath was like holding a twenty-pound limp noodle. Our sweet baby boy, once healthy and thriving, could not even hold up his own head. He was expressionless, and nearly motionless, except for spasm after spasm. He was gone. Our son was gone.

After having several experiences with different teams of neurologists (no less than 6), plus countless residents, at a well known hospital, you would think that someone would have gotten the diagnosis correct. Or, at the very least, that one of them would have scheduled a longer EEG. You would think that one of them would have listened to us about how the seizures were changing. You would think that one of them would have watched our short video clip. But up until then, we weren’t so lucky.

But, then we found you. You didn’t even know us yet, but you took a quick moment to watch a video clip that had been emailed to a nurse’s phone and handed to you by a resident. (Our first neurologist wouldn’t even watch the video during our scheduled appointment). You had us in within two days for Zane’s first 23-hour EEG. Sadly, it all confirmed my fear that it was, in fact, Infantile Spasms. But, you moved quickly to get us in, get it diagnosed and start an appropriate treatment. Zane’s path wasn’t an easy one, but thankfully, we found our miracle. (I never would have thought I could have been so happy to give my own infant shots in the leg each day for months, at thousands of dollars each. But, once it started to work, I was)!

Within a few weeks, we started to see his smile come back, then his giggle. We started to see milestones he had lost return. Then we saw new ones. Now we have have cute videos of laughter and pictures of that spaghetti stained face. With lots of therapy, we helped him learn to crawl, learn to eat, and learn to walk. Now he’s jumping, dancing climbing and nearly running. He is becoming quite the toddler, testing limits with a smirk on his face and a twinkle in his eye.

I know from online forums that many babies with I.S. don’t have the same outcome. So, I do know that some part of this may be luck. Yes, Zane is lucky. But, part of his luck was finding you to be his neurologist.

So, from the bottom of my heart, I thank you. Thank you for listening to us, thank you for being kind and most of all, thank you for helping our son. He would not be where he is today without you and your wonderful team.

With much appreciation,
Holly Guillaume

Speech Therapy

We FINALLY had an appointment for speech therapy through ECI today.  Even though we have seen him progress from where he was when he was having seizures, he did not score very well.  He’s somewhere in the 3-6 month range (at 13 months).  They (ECI) finally seem to realize that they should proceed with therapy, though they made sure to note that it won’t look very scientific at this point.  It’s more like play.  But, they mentioned that sometimes kids will do better for someone who isn’t their parent.  (Boy have I learned that with a 9-year old! lol)