Overdue

We have now been home on pass for a month! I had to count back twice because I couldn't believe it..  4 weeks with no infections!

We've been coming in for checkups/blood work twice a week (some times more). His hemoglobin has remained stable since our last admission and is tolerating weaning the prednisone (a steroid that suppresses his confused B cells). We've had to TPA his lines again last week because they were having trouble drawing off blood. The TPA was a huge success and both lumens now work and are not positional at all (so far.. fingers crossed they stay that way). We were told today that if his blood work is stable again that we can go down to one visit a week, Whoop! This means less chance of infection for E and more free days to be a little boy :)

(Emerson was surprised with a birthday present from aunit 2 at our appointment today- this is a such a wonderful hospital!)

Donor update: We are still waiting to hear about news of a donor. They think it will be soon (they always say that..). They have run high definition screening on a couple matches that came back good! That means that there are potentially two perfect matches for Emie! As long as the matches agree to donate. Every time I think of the donation process I get choked up. It is truly a blessing that they have programs like this in place and that there are so many willing people. I cannot stress enough how grateful I am that someone is willing to give my son a second chance at life. They truly are a hero because without this transplant he will die. I don't know how I will ever find the words to truly thank that person. There is nothing I could do or give that would be enough. I guess I will have a year to sit on it and think something up :)

Once we have a willing donor they will give us a time frame as to when everything will happen. There is a lot of organizing that needs to take place in order for it to run smoothly. Our doctor told us that once notified the transplant will normally take place in 4-6 week. This will give us time to get any other testing done Emerson will need. So far he has had his ears and eyes checked, both passed with flying colours. He will also need a 12 lead ECG (testing his heart) and a CT scan of his organs. These need to be done within 30 days of the transplant. They also have to organize when the donor will donate because once they go in they have 48hrs to give the stem cells to Emerson. Prior to this we will need to have gone through chemo. This is partly why it takes so long to be notified that we have a donor because there is so much organizing that needs to take place first. That being said it does not make the wait any easier..

Last week they were granted the funding we need to run a more detailed genetic screen on Emerson. So far all of his tests for SCID type have come back negative meaning that he is not one of the 14 most common types. This is important for our family because it will determine if we will be able to have future babies naturally. It also will determine if our other family members will be able to have babies without worrying.. These tests will not come back for 6-8 weeks.

It has taken me so long to update the blog because things have been stable and we have had such a happy busy boy at home. Writing these blogs brings me back to reality and the reality is Emie is still "sick". At any moment he could catch an infection that could potentially kill him. The fear and sadness is always lurking and the smallest things bring them up. I haven't wanted to acknowledge these feeling by writing a post but thats not healthy either. So I am happy that I finally sat down and wrote a post. As hard as it was it feels much better to get the emotions out and cry a little.

Emerson turned ONE last Wednesday! We had a really good day :) We started off with breakfast and balloons. Went for a walk after his nap and had a mini photo shoot with his birthday crown. We played outside and then JP came home from work. We organized a time for all our family to FaceTime while Emerson opened his presents. I am so thankful for modern technology! He was so excited for every single present! After that we had corn on the cob (Es favourite!), ribs, and macaroni salad. We finished with his cake smash. He was so excited for his cake. He only had a couple bites and made a mess with the rest. He's started shoving everything down his crotch in his high chair.. so his entire cake was smashed down there. It was really a special day and I'm so happy we were able to spend it at home.

Please keep praying that Emerson finds out about a donor ASAP and that his health streak lasts until we have to go in for the transplant. Thank you to everyone for the words of support, xo.

I hope my next post is about our DONOR :)!!

D