Mommy's going to do her best to remember the highlights of the week but to be honest the last several days have all blurred together into a hectic but exciting burst of time. Daddy and mommy just finished our late night dinner and discussed how nice it would be to fall into bed when we realized we needed to do laundry, paperwork and get some things ready for the week so I decided to write you a little note while we wait for the washer to finish. The theme of this week has been learning. Everyone has been learning all kinds of new things including you.
Let's start with mommy and daddy. We have officially checked off all of education requirements necessary to bring you home. The last steps we had remaining included a twelve hour day and night stay for both mommy and daddy separately with no visitors or help from the nurses to take care of you. You were a very well behaved little boy and slept almost completely through the night for both of us. Unfortunately between medicine times, setting up/changing your feeds, your injection, trach care and cathing there wasn't much time for mommy and daddy to sleep but that certainly wasn't your fault. Hopefully with time there will be less and less of those things to interrupt the night plus we will have a little more flexibility with your schedule at home. You are absolutely doing your part to help mommy and daddy get some rest and for that we are very thankful.
Yesterday we completely the grand finale of tests by practicing getting you in/out of the car. The "you" part of that task is a breeze but the plethora of accessories that have to come with you is a bit more of a challenge. No worries though mommy and daddy worked through it as a team and in no time you were in the car and ready to ride (I promise buddy next time we'll actually put the car in motion). You don't seem to mind the car seat or the stroller as long as its moving and you aren't in the bright sunlight. I'm sure the sun and the wind have to be a little scary after being inside in a somewhat dark hospital your whole life. Hopefully when we're at home you will get more used to it and before long you'll love it. I promise buddy being outside is so much better than being cooped up indoors.
Next let's talk about some of the learning a few of your family members did this week. The educator on the TCC set-up a special class to teach your Grandma, Grandpa, Uncle Scooter and Auntie Beth some important aspects of your care. They all spent a few hours learning about your trach, CPR, feeding tube, etc. Mommy thought it was awesome how eager they were to learn about how to help take care of you everyday and what to do if you had an emergency. Grandma and Grandpa both learned a lot about your vent this week and they are able to take apart and change out all of the tubes if necessary. Grandma finished almost everything on her check off sheet and even changed out your trach. I think this is something that is pretty scary to most people but once you've done it you realize it isn't that bad. Grandma did great and we're super proud of her. There's going to be a lot more learning for them and several other of your family members during not only the next week before you leave the hospital but the next several months at home. You are such a good sport and when someone is learning something new it's almost if you realize it and are extra patient. Thanks buddy.
Now let's talk about you and all that you have been learning. Almost everyday you seem to figure out something new. It's as if you are learning at a super pace to try and make up for all that time that you were held back because you were recovering from a surgery, unable to move, sedated or just too sick. As your mommy it's absolutely amazing to watch your little brain and body explore new things. You have really taken a liking to certain toys and you react differently to them. My favorite reaction to see is when you catch sight of your glow worm. You have always liked him but now when you see his face you instantly smile. It's pretty darn cute. Then there's the toy we call your baby ipod (we got that name from your California friend Ronan and he actually gave you one of the two copies of this toy you have. The other one is from your cousin Carter. You better believe we are keeping both of them). You are completely mesmerized by this thing and it is by far the best tool mommy and daddy have to distract you or cheer you up if you are grumpy. You like this toy so much that the other day while mommy was in CPR class with your family daddy saw you roll over to your side to reach for it. Now you did have a little help with how you were positioned in the bed but regardless that's the first attempt you have made to initiate rolling on your own. I am so thankful that your daddy was there to see it and took a picture for mommy. You have started passing toys from one hand to the other and put things like your pacifier in and out of your mouth much more accurately. Another interesting thing you have been doing is inspecting the details of your toys and blankets to find the tags and small parts that your little hands can grasp and of course immediately shove into your mouth.
Another very important step that you made this week was getting a speaking valve and tolerating a some time off the vent. This valve doesn't exactly allow us to hear you at this point and it had to be modified a little to decrease the pressure but the doctors tell us it's a pretty awesome sign that you are able to tolerate it at all this young. You have been able to handle two periods during the day for up to an hour each with this valve on and no ventilator. Most of the time you don't mind the change at all but it does seem to wear you out a little. The doctors say this is great exercise for your lungs and as time progresses we will try to make these windows of time off the vent longer and longer. It sure is easier to cuddle with you without those big old tubes and I look forward to the day when we can enjoy more and more of that time but for now we will celebrate the two hours we have.
As you can see this week has been action packed with so much learning that mommy's brain hurts. Mommy and daddy are very impressed with the progress you are making and the skills you are gaining all while weaning off two more medications and even putting on a little weight. Connor you are truly a miracle. We are so very thankful for all the therapists that are working hard with you to develop and progress. Mommy and daddy are also especially thankful for the nurses, respiratory therapists, and Lisa the educator who have spent so much time teaching some your family how to care for you (for those of you who haven't gotten to learn yet no worries there will be plenty of time). It's a pretty special experience to watch so many people work so hard for one little boy.
Mommy and daddy love you Connor.
-Mommy
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