I know I owe you all an update and so sorry it has taken me so long...I think we are just trying to get used to being back home and our new schedule and routine! So...let me rewind and go back to where I left off on the last blog...Day 5!
Day 5 was another good one for us...Logan and Mommy slept through the night with no one poking us or medicines being administered and we both woke up nice and rested. We had therapy again at 10 and to say the hospital was quiet would be an understatement...since it was the 4th, we were the only people in the gym and they didn't even have the lights on for part of it. Our poor therapist Brandi was the only one on duty and she seemed to be pulled in all sorts of directions. We first went through our discharge orders, including what to expect, when we can take a bath (not soon enough!), prescriptions, etc...lots of information but all good stuff to get us on our way! After that we did some more therapy, some sit to stands, walking, got back on the bike, did a little stretching, we were a little fussier today than we had in the past but I am wondering if that may be because he was sore from his two big workouts the day before. We ended our hour session in the ball pit, of course, and then headed back to the room to get formally discharged from the hospital!
Look at me go!
It takes a village!
Boss man and his pit crew!
Pure Joy!
Ventriloquist Lessons!
I don't think you could have cleaned up a room and gotten ready to leave quicker, we were just so excited to go! The nurses came in with our paperwork, went over a couple of things about his medicine and let us head on our way, thank goodness!!! We were able to get a 2pm checkout from the hotel so we just went back to our room where, Mommy was finally able to shower and Logie took a nice long nap on a real (not plastic) bed before heading to the airport.
Peace out St. Louis Children's Hospital!
Once we got to the airport, Logan kept asking to "Get on the plane" even though it hadn't yet arrived, I think he just thought that would allow him to get his iPad quicker! The flight was a little rough, we had some fussing and some whining from lil guy, I think because he really just wanted "triangle" (aka YouTubeKids) and guess what it doesn't work without internet...oh well...luckily the flight was only an hour! He did have some good sing alongs and show narrations for the entire plane...why is it that he can be so quiet when he talks most of the time and then when you want him to be quiet he screams??? Oh kids! :) Uncle BJ was there to pick us up and we headed over to La Paz for dinner and some yummy cheese dip (Logie's favorite...ok, mine too!). ;)
We have had Logie sleep with us the past couple nights as we are worried he may try to get in and out of the bed on his own and that may be a bit difficult with the surgery still healing and how weak he is right now. Thankfully he has somehow just figured out how to sleep with us all of a sudden so really it hasn't been a problem at all, actually kinda nice to fall asleep with your little buddy holding your hand!
Just in case you guys think he is always smiling!
On Wednesday, Gammy Bootcamp started in full swing, getting him up and walking as much as possible and doing his stretches. They said the most important thing for him is to be on his feet so we are trying hard to do that (which is super hard for Mommy when I just want to cuddle)! He was able to do some walking in his walker with and without AFOs all by himself, in St. Louis they were still holding on to him but we were able to get him walking (albeit a little weak and lots of upper arm strength on his side) all on his own which was so exciting to see! He was even able to sit indian style, which was a challenge to say the least before surgery!! We did our errands to Costco and Publix and thankfully Chris reminded us to bring a pillow for him to sit in the carts, we hadn't thought about that but the metal bar is right where his incision is so that would have been super uncomfortable! There was no therapy today so we just came home read some books, watched some shows, did some more Gammy Bootcamp then headed off to bed.
Look Ma, no hands!
Here I come!
Today was our first day of PT after surgery. We are going to a spot that is about 50 miles in each direction as they have some good experience with post SDR kiddos. Unfortunately the therapist we were initially assigned to work with was not pushing him as hard as we would like, we don't want him in his comfort zone we need him to be pushing hard to get stronger and stronger, so we had to reassess that piece but I think we are on the right path now moving forward. He did a great job and everyone was so excited to see how well he was doing!
After that we went and picked up his new AFOs...it's like the bionic man compared to the old ones...there is even a little (or big) mechanism on the side that allows you to tighten or loosen the amount of dorsiflexion allowed. For now it is very rigid because he needs more support but as he gets stronger we can loosen it so it will allow for more natural foot / ankle movement. Crazy the difference in size and weight between the two!!
Out with the old, in with the new!
We have therapy again tomorrow, we will be going for 2 hours tomorrow since he did so well today, and I will try to take some more videos / pictures to share with everyone. Please keep the prayers coming, this is the part that really gets hard as we have to keep on it at home and in therapy 24/7...lots of work for Mommy and Daddy (and Gammy) but we know that it will all be worth it in the end! XOXO
Logan holding Daddy's finger! Another good day in the world of Logan! The most exciting part of our day is that as of last night, they were able to totally ween Logan off his Dopamene (it was regulating his blood pressure) which in turn means Logan got his first meal this afternoon!! They said that he took it really well and didn't have any spit up which was a great sign so hopefully this is just the beginning and we will be able to continue this going forward! (now if only my milk will come in so I can feed him!) Besides that, the cardiologist came in again today and the PDA valve that I mentioned before still hasn't closed. They are going to check it one more time on Friday and if there is still no progress they will try using medicine to close it. We are hoping this will work but if not he will have to have a little procedure where they will go in through his back to manually close it off. Logan's Home Away from Home! When we were there...
4 weeks is so tiring!! Our little man is officially 4 weeks old now! It is amazing how far he has come and how much he looks like a little baby now. The past 4 weeks have definitely been hard ones but it is reassuring to see how far he has come and I know we still have a little ways to go but we have made great progress so far... Things continue to be pretty stable with Logan over the past couple of days, we are still on the nasal cannula and at level 7, so no big movement there. We think that some of this has to do with the fact that he had to be intibated for so long, but the doctor is trying him on some diuretics to see if that may help as well. He said there is a chance that there is some fluid in his lungs causing it to be a little harder for him to get stable on his breathing so fingers crossed that will work, it seemed to be a little better yesterday. As of Thursday night he is weighing in at 4lbs 14.5oz so we are almost to 5 pounds....
Just chillin' at the beach! Hi everyone, I am sorry for not writing earlier but things have been pretty busy for us. There seems to be so much that happened over the last week and a half I am not quite sure where to start! I guess first of all, when Logan went to the doctor almost 2 weeks ago for his check-up we found out that he has broken his first tooth!! He had been so miserable and not wanting to be touched that we didn't even realize this had happened. Poor thing, no wonder he was so upset, breaking a tooth and steroids...I wouldn't want to be touched either!! At that doctors appointment we also found out that Logan's blood pressure was a little high, the doctors weren't overly concerned as it is a common side effect of the steroids and the following day was going to be our last day of high dosage shots. By this point he had gained about 2 pounds since starting treatment and he definitely looked very uncomfortable and his skin had become so ...
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