Busy Busy Bee!

It seems like we have been on this journey for a long, long, long time. Reality is it has only been 19 months- minutes feel like hours, days like weeks, and months like years...The world seems to move in slow motion when you only get about 20 hours of sleep a week :)

Jackson's Tonsil & Adenoid surgery went very well, and he is recovering nicely. The Bronch (scope of airway) showed nothing of concern. They lasered off a small piece of tissue that had grown above the trach. Jackson has a normal sized airway and moving vocal chords!---which means 'structurally he does not need the trach tube...in theory.' He slept the entire day of the surgery which made me even more thankful for his g-tube. I was able to let him sleep while I loaded him with fluids. He was on a great pain medication that was given every 2 hours and rarely fussed. It is a pretty painful recovery for any kid who has a T&A removal, and we expected the worse since he will not take anything orally (like a Popsicle or ice cream) to soothe his throat, but he did extremely well!

Jack after having "Loopy Juice" right before surgery

So whats next?
After the surgery was over and we received the good news about Jackson's Bronch I wasted no time in calling our Pulmonologist to let them know how everything went. Jackson now needs a Sleep Study without his trach in place. First they will do a "Nap Study" during the day where they take out the trach for an hour or two while he is awake (if he naps it's just a bonus). If he does good with that he will then spend the day hanging out in the hospital without his trach, and go back to the sleep lab that same night for a full sleep study. During the sleep study they are looking for any signs of apnea and labored breathing. They will also take Jackson off of oxygen to see how well he does without it. (I suspect he will need it for a little bit after he gets his trach out) But who knows... this kid never ceases to amaze me! JUNE 6th at 8am we will check in and hopefully come home the next day trach free! There is always a possibility that he will not do well, and come back home with a trach... but we are not even going to put those thoughts in our head (or his!)

It has been such a busy month for Jack! He also had Strabismus Surgery today to correct his crossing eyes. The surgery was done by the same eye doctor who did Jackson's Retinopathy surgery when he was in the NICU. The surgery went very well and Jackson was back to him self within an hour! We should see the full results in about 4 to 6 weeks. There is a small chance that the surgery will need to be repeated, but his crossing was pretty mild and we do not expect that to happen.

He was so happy before surgery!

I feel like we have been running on 'Auto Pilot' these past few weeks. So much is happening I can hardly keep up with it all! Jack's therapies have been increased and we now have PT, OT, and Speech once a week. We were really excited to start back with his PT after taking a few weeks off. A new therapist came and assessed him and by the end of her first session he was doing things we have never seen him do! We originally had a "stander" on order for Jackson to use to help him learn how to stand, but he has once again amazed us and has learned how to do this all on his own. So we are now getting him fitted for a Gait Trainer that is essentially a glorified walker. It will help him to learn how to walk and build up strength in his trunk and legs.

We are counting down the days until his trach comes out... What a journey it has been. His bedroom is going to look so empty without all of his medical equipment... I can't wait! We are looking forward to ending this chapter in his life, and open up a whole new world of opportunity for Jackson.

"For I know the plans I have for you," declares the Lord,

"plans to prosper you and not to harm you,

plans to give you hope and a future."
Jeremiah 29:11

Something "Clicked"

It seems like this past week something just 'clicked' with Jackson. I can't quite put my finger on it, but something has definately changed. He is so motivated now, and WANTS to do his therapies, and play, and be active. He even started bearing weight on his legs! (he's still not too sure what they are for, but it's a start!) Today we were in Target just getting out of the house since it decided to stop raining. Jackson was actually looking at everything, grabbing at things, and smiling at people who passed by. He has always been a social butterfly, but he just seems to be coming out of his shell even more theese days! In the past Jackson seems to do something just to show us, and then not do it anymore... Like sitting, waving bye bye, putting his arms up when he wants held... but now he seems to be doing these things more and more often. He has even discovered that he has legs, and is bearing weight on them when we hold him up ....good boy! :) These are the little things that continue to give us hope that someday he will be a 'normal' kid.

Jackson met with his ENT this past week and he does need surgery to remove his Tonsils and Adenoids before we can move forward with getting his trach out. We had to wait 3 months to see this ENT and have known that this needed to happen since January! To our surprise they were able to schedule surgery for Next Tuesday (May 10th). It's more common than not with trach kids to have this procedure done. It is most likely going to be an Outpatient Surgery unless he has any issues that would make them want to keep him over night. They will also do another Bronch (scope of his airway) during the surgery to see if there is any narrowing or tissues that need to be removed before his trach comes out. 4-6 weeks after the surgery they will schedule another Sleep Study without his trach, and if he passes he will come home trach free! (keeping fingers crossed)

Jackson also has eye surgery this month on May 23rd. This is a less of a surgery and more of a 'procedure' as there will be no actual cutting involved, but still will go under General Anestesia. Hopefully after this no more surgeries! I am a little aprehensive about all of this. Jackson has had surgery before, but it's always scary and heart wrenching to watch your child go through. He has had 2 surgeries in his little life, and has done very well with all of them, so we are praying theese will be just as good.

I also can not get over how happy Jackson is. He is such a good baby...and always has been. He has taken everything with stride and rarely complains. I wish I had half the resilance he has! I have continued to see answered prayers, and miracles happen within this precious little boy. I thank God every single time I see a smile, a frown, a tear, a poopy diaper, and for every single breath that Jackson takes... It's so hard to believe that he is 18 months old. I have watched him grow and develop in ways that not a lot of mothers get to experience, and although it is a hard road It makes every single day just that more special. He is alive, he is happy, he is healthy... Thank You God!