It seems incredible that is has been exactly 2 months since Ryder was finally discharged from the hospital. Time has flown by at an amazing pace. We have kept busy with lots of appointments, therapy time, and play dates.
We are ecstatic (to say the least) that Ryder has been seizure free for 4 months and just a few days ago was weaned off of all of his seizure meds. His neurologist is so confident that he has beaten infantile spasms (IS) that he is not putting Ryder on a "maintenance" med. He will be med-free when it comes to seizures, and fingers crossed he will remain that way for a long, long time. The weaning process took 4 weeks to slowly cut down on his dose, but as we continued to reduce the amount he was getting we began to see some very positive changes in Ryder's development and his behaviour. It was an exciting month around here.
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| Sedated and awaiting his ERG (special MRI) of his eyes at Toronto Sick Kids. This test checks for any peripheral vision loss that may have occurred as a result of the seizure medication. |
He is finally sitting up on his own (within the last two weeks) and is able to balance for a little while without using his hands for support. He also "found" his feet and has improved the flexibility in his hamstrings (both of these factors were contributing to him being unable to sit previously).
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| Sitting like a big guy and inspecting his hand! |
Another super exciting change in Ryder happened in the last few week as well. We had stopped offering him bottles for several weeks because it was always such a fight....a fight that ended with Ryder screaming, coughing, choking, aspirating, and/or throwing up. It just wasn't worth the stress (for any of us) when we knew he could get everything he needed from the G-tube. A few weeks ago I decided to try a bottle again, and to my complete amazement he drank from the bottle the same way he would have several months ago...no screaming, no aspirating, and only a little bit of coughing. As much as I don't want to admit it, having the feeding pump around was really easy to get used to. We could feed Ryder absolutely anywhere (including while driving in the car) and just go on with our day without having to stop and feed him a bottle. Having him eat from a bottle again has taken some getting used to since I have to actually stop what I'm doing and feed him. However, I have realized that I was missing out on snuggling and holding him, and I now look forward to feeding him his bottle.
As Ryder's 1st birthday (and Ethan's 3rd birthday) is just over a week away, I've been thinking a lot about how much our lives have changed over this past year. We happily became a family of four and welcomed the sweetest little baby in to our lives. Although the challenges and obstacles we have faced were certainly not what we had imagined, I am blessed to have chosen such an amazing partner in life. He is supportive, patient, and tolerates my very specific ways of doing things (and the meltdowns that ensue when things don't go my way). He forces me (I mean this in the nicest way possible) to keep things in perspective. I am incredibly proud of how strong we have been as partners and parents in what has turned out to be a very unpredictable situation. Despite the unknownness of Ryder's condition, we continue to live the life I have always dreamed about: we spend quality time together as a family, and are raising two of the sweetest, kindest, and cutest boys I could have ever imagined in a happy and loving home. What more could I ask for?
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| Love those cheeks! |
Our only limitation is our belief that it is so.
~Moshe Feldenkrais
