New Year. New Kid

We have been home for 18 days and the month of December feels like a blur-until I look around my house and still see stuff everywhere! Christmas decorations that need to be put away, laundry that needs to be done, hospital paper work that needs to be filed away, and old toys that need to be sorted out. Guess what we will be doing this weekend...

18 days ago I didn't know what to expect when bringing Alexander home. I felt anxious and nervous. He had a new medication schedule to work with, still on sternum precaution, and his balance when walking wasn't great. It was at a point of having to watch him closely because he would need help getting up off the ground or to make sure he didn't fall (remember it's an 8 week healing process. No falling until after January 28th. No lifting up under the arms or extensive stretching of his arms either.).  Then there was Christmas. I felt blessed to be home. We got to decorate for Christmas, finish Christmas shopping, wrapping gifts, watching Christmas movies and making Christmas cookies. All of the little things that are involved with the holiday.  It was great being able to make cookies with Alexander because he can finally be in the kitchen when the oven is on! When he was on oxygen, he couldn't be near the stove or oven. We even got to use our fire place.  It really is the little things Wes and I can finally do with our amazing boy.  We had hoped to visit with some family over Christmas and New Years but because they were sick, we stayed home. We did see my parents and Wes parents. So our Christmas and New Years was quiet and calm. Something Wes and I didn't mind at all.

Since the holidays, we have started to see Alexander change. He is a whole new kid. We took a trip to Lowe's after the holidays and for the first time, fear of losing my child entered my mind! 15 months of him on oxygen,  I was forced to stay right behind him. Prior to the oxygen, he had just started walking, so he wasn't going very far then either. He's moving so quickly now, that he's even starting to run! He's never been able to do that. So now we have to make sure he doesn't fall when he runs!
He's also loud and feisty now too! He lets out some screams when something doesn't go his way, he walks/runs away from us when we are asking him to do something, and his temper tantrums have included a growl! He's beginning to produce more sounds, so we are hopefully that he will start talking soon. Fun times in the Alleman household and I wouldn't trade it for anything! It's a whole new life for us! New Year New Kid.

Medications have tamed down a bit since coming home.  He's off one medication (no more diuretic-hello potty training time! finally!!), but a second blood pressure medication was added, as his levels are a little on the high side. Alexander just started this medication, so next week we hope to see some changes. We are still going to CHLA once a week for follow up appointments, but soon it will be every two weeks, then every month, then every six months, then yearly. Time will tell on when all of those can start to be spaced out. In addition to the 12 different medications he's on and the weekly visits to CHLA, we were also told that all of his therapies need to start at CHLA first and once he gets stronger, then his therapies need to be provided in the home. So I'm taking Alexander to CHLA for PT and OT twice a week. A speech evaluation is happening next week, so I'll find out how often he'll be receiving speech too. To recalculate, that's 3-4 times a week to CHLA.

To top it off, Alexander CAN NOT return to his school for 1 year, (I cry cry cry!). Because his immune system is low, he is at risk for getting sick very easily and his body will take a longer time to get over the illness the first year, which is why we have to be VERY cautious with were we take him. When I take him to CHLA or any other medical facilities he has to wear his mask. I'm disappointed that he can't return to his school (which he loves and misses) and will now be looking into getting some sort of in-home school program for our preschooler. If there are any educational administration people that know who I should be contacting to make this happen, PLEASE call me or email me! I can only do so much in the home. I don't want Alexander to go a year without any additional education.

1st time to Toys R Us

This week there has been some allergy symptoms floating around in our house. Wes and I have been living in our house with a mask on because we don't want Alexander to catch the same symptoms. He's been sneezing and coughing occasionally, so payers that he doesn't get sick.  I haven't been able to return to work yet, but as you've read, finding the time to go back to work isn't really there right now. Perhaps once a routine for Alexander gets into place, then I can find out when I can return back to work.

So New year. New Kid, with lots of new changes. Prayers that Alexander continues to get good reports at his follow up appointments, that his medications can continue to titrate down, that he doesn't catch a cold, and that we find in-home schooling for him! I will update in a week or so, with how the therapies, doctor appointments have been going, and how Alexander continues to amaze us all! 💕

Disappointed by some of the bowl games! 😂

Date Day to the Rose Bowl 🌹🏈