I have been sitting by your crib for several hours now watching you sleep peacefully. As much as I love our play time and watching your little hands move about I have to say it's wonderful to see you rest. The last two days have been filled with some rough times for us. You have been pretty upset several times a day and it's obvious that something is bothering you. I wish it was as obvious what that thing was but as of now it's a mystery. I also wish I could do something to calm you down and comfort you but right now the only thing that seems to do the trick is medicine. The doctors have run through a series of ideas but no answers yet. More specialists, more tests and more possibilities of scary problems but as your smart daddy told your upset mommy last night, "we don't know that of those things are true, they are all just theories." So for now we aren't going to waste time and energy talking about those things and mommy will try not to let her mind get ahead of things.
Despite the fact that the past two days have been pretty rough there has been a good development. On Thursday the occupational and speech therapist came to see you together. They had gotten the green light from the doctors (thanks to ENT for pushing for this) to try tastings with you. This means they put the littlest bit of milk in your mouth and see what you do with it.
When the therapists arrived you were sound asleep and I mean SOUND asleep. They both looked at you and said, " I doubt this is going to work out today." Mommy asked that they at least try and wake you up before they wrote the day off. The OT sat you up and we rubbed your face, feet, belly and you still kept sleeping. It took a good 10 minutes to get you fully awake but you were pretty happy when you finally cleared the sleep from your eyes. The speech therapist started with your favorite paci which you sucked on right away. She then explained that because it has a flat nipple it's easier to keep in your mouth but doesn't use your muscles in the same way you would need to suck out of a bottle and swallow so she switched to your other paci. We call this one your therapy paci. You surprised her when you took to paci number 2 without much trouble. She was then a little hesitant to try the actual bottle nipple because she said that's a lot of change in one session but your OT told her you were a rock star and so she tried. Much to their surprise you started sucking on the bottle nipple like you had been doing it your whole life. The therapists were giddy with excitement. The next step was to put some milk in the nipple and see if you could get it out. They started with one milliliter of milk and in a split second the nipple was empty and you were looking for more. They gave you a second milliliter and you took care of that too but slowed down a good bit. Mommy and the therapists couldn't be happier. It might not have been much but swallowing anything was a huge victory.
Yesterday the speech therapist came by early in the morning before mommy was here and tried to work with you but you weren't very interested in trying (you had recently had a dose of sleepy medicine so I can certainly understand not being interested in therapy). Mommy was disappointed that she missed the trial but one of the occupational therapists said she would be back later to try. While mommy was at lunch with one of her good friends, Julie, the OT returned as she had promised. Luckily your daddy was here and got to be a big part of your second day of tasting. The OT had daddy hold you and put the nipple in your mouth while she dropped the milk in. You ate a whole 8 milliliters of milk in a row. BIG PROGRESS!!!! Daddy and I are so proud of you little man. The therapist said they would do a few more trials next week and if you kept eating about the same they would move onto a swallow study. The swallow study allows them to make sure everything is going where it's suppose to and not sneaking into your lungs. Since we haven't had to suction any of the milk out of your trach after you've eaten these two time it seems that you're off to a great start.
Although sometimes it seems that the mountain you have to climb is insurmountable you always amaze us by tackling each obstacle as if it's nothing. There's no doubt that we have a very long road ahead of us but your strength and fearless attitude pick me up when I am worn down. Connor you are my hero. To a lot of people drinking a little milk may not seem like a big deal but for you it's HUGE. This will be the case for most milestones you will achieve. It may take us a little longer to get there and I'm certain it will take a lot more work but that will only make them mean so much more. Let's try our best to celebrate your victories and worry less about the obstacles left to conquer.
Mommy and Daddy love you Connor.
-Mommy
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