From the beginning...
This week we had the orthotist appointment where Judah was to be fitted for his new, hypoallergenic helmet. As you may recall from a previous post we had prayed about whether or not to proceed with a new helmet, and because Judah's rash was still prevalent, proceed we did.
However, in the two weeks between the scan and when we were to go for the fitting, the rash disappeared--as did the sweating. I mean, there has been ZERO sweating on Hawk's head, even that weekend when temperatures were in the 20s! Within a few hours of the daily cleaning routine, both Judah's head and Helmut used to reek like old, sweaty hockey pads (I have memories of terrible awful smells emitting from one of my brother's duffel bags when his sports gear wasn't washed or even properly aired out... for the love of Pete, take that bag and burn it!). But in the last couple weeks when I've taken Helmut off Hawk's head still smelled like yesterday's shampoo and Helmut is clean and odourless! Amazing!
But the new helmet was already in the process of being made...
So the plan was to go to the appointment and see what the orthotist said. Before we left I discussed my concerns and uncertainties about accepting the new helmet with a wonderful friend of mine. I told her that we had just been praying that the Lord's will would be done, and that we would be convinced what his will was once speaking to the orthotist. She encouraged me to ask the Lord that his will would be spoken to us through the orthotist: we would trust that his advice was the right path to take. She prayed for us and on our commute I continued to pray specifically for the orthotist's words to be our confirmation of what would be best for Judah.
Once we arrived at our appointment Alan came into the room with the new helmet. He asked me how Helmut was working out, and I told him that it had performed perfectly: no rashes and not even any sweating! I sheepishly expressed that I felt a bit silly for going to the trouble of having Judah scanned for the new helmet. Without missing a beat, Alan piped in, "You don't need to get the new helmet if you don't want to." I was shocked and thrilled! He then proceeded to remind me of what a hassle the new helmet would be:
More sweating...
More difficult to fit...
More complicated to work with because of the softer material...
A much less pleasant experience for Judah...
Alan removed Helmut and thoroughly examined Hawk's head. He spend a good few minutes taking measurements of his head and comparing them to past numbers. He summarized that a) Judah's head had indeed completely healed from the rash; and b) his head shape had improved! Helmut was doing its job beautifully! Praise God!
Alan took Helmut to his workshop to make a few adjustments. As Judah's head grows and shifts Alan will sand down certain points to encourage and inhibit the shape so that it forms as symmetrically as possible. He adds patches inside - a moleskin material of sorts - to "fill in" sections, and takes a sander to other angles. It must be quite the precise art to form this hat!
So needless to say, we are absolutely thrilled to be able to continue using original Helmut! We are hopeful that by the end of his treatment the abnormalities of Hawk's head will be nearly unnoticeable. Our biggest prayer right now is that his physiotherapy would succeed in strengthening his neck and correcting his head tilt. For the most part it seems like his tilt has improved, but when Judah is tired he holds it at an even more exaggerated angle than ever. This is normal, but not good. We continue to stretch his neck and do his strengthening exercises a number of times per day and we can only pray that this is doing the trick. He tends to cry when we do the stretches :(. I used to sing the "A, B, Cs" to Judah while doing the stretches, but I've recently started to sing whatever song is in my head so that he doesn't have a total meltdown in a few years whenever the alphabet song comes on like some sort of twisted Pavlov's dog theory.
So that's the good news of the week! Whew! Amen! It feels like life has been a bit of a whirlwind recently. David and I would like to thank all of you for your kind words, support, cards of sympathy and prayers over these past few weeks. Linda's memorial service was beautiful; David, Don and Sean, and the rest of Linda's family and friends did an incredible job of honouring her life. We're doing well. Tired, but well. Life is carrying on and we are discovering what it means to grieve, process and reflect amidst the day-to-day of ordinary living. Thank you for loving on us!!!
Until next time,
Janelle and the boyz
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| In the waiting room |
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| I'm not sure what he was doing... |
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| He must be praying. Good lad! |
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| He LOVES standing! He can't get there on his own yet... but when he's up, he's UP for a while! Today he particularly enjoyed playing with the blinds :) |
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| New helmet on the right... and back to Florida it goes! |
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| Mr. Bacon is the best teething toy! |
