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I’d like to start by saying thank you for your patience! It has been a little while since we’ve updated this blog. Life has been busy, to say the least, and we are still working through our new normal with Brooks being home...but I think we are beginning to nail down a decent routine with him, Sadie, and everything else.
Here’s a cliff notes version of what’s been going on since we last posted:
- For those who do not follow Brooks on Facebook (just look up Brooks The Champ), we were able to come home from the PICU on July 10th after 225 days in the hospital. It was a very emotional day and we are so grateful to be home.
- On July 20th, we had to go back to the PICU due to some mucus plugging of Brooks’s trach and an emergency situation that morning. Thankfully, he was totally fine by the time he got to the ER and was already smiling. I think he just missed all his pals at the hospital....it was a 48 hour visit and then we were released to go home again and have been home ever since.
- If you’re following along with SmashSMARD, you know that we have recently clicked over $1.2 Million in funds raised for gene therapy research! This is a HUGE deal. They say that most new non-profit organizations are lucky to raise $100,000 their first year...and we’ve done over 10x that in about 9 months. We can’t express our thanks enough to those who have contributed and helped us along the way. This is truly turning out to be a modern day miracle, we believe, for these kids to get treatment.
- Brooks has been able to travel a little bit since Mom and Dad bought a new minivan! He has visited his grandparents at their house who live about 40 minutes down the interstate, and is having a blast! He doesn’t like his car seat that much...so we’ve recently acquired a “car seat bed” that we think he will like better (thank you Stineman’s!!).
- We were finally able to get Brooks started with Physical, Occupational and Speech Therapy at home. One of the therapists came by to experiment with some assistive technology so he could play with toys in his own way...and to say that he was excited is the biggest understatement ever. He was lit up like a light bulb he was so happy! Jess and I were ecstatic to learn that we could do so much more with him during playtime than we ever thought possible. I’m very interested to see what sort of strength he can develop with regular therapy. He has also been much more active lately and seems to be getting physically stronger in certain areas which is great!
- There has been some recent challenges with home nursing care. Especially at night....ugh. One of our regular night nurses was out for over a month due to surgery, and our home nursing agency has been working very hard to find a replacement but to no avail. So, we’ve been doing night nursing duty ourselves about 5-6 days a week for about a month. Good news though! We’ve been covered this last week and our regular nurse is back in action starting tomorrow! So we can get some sleep again. Thank you Jesus.
- We are fast approaching Brooks’s 1st birthday! It’s on October 24th. We can’t believe it. He’s still the happiest kiddo I’ve ever met and is getting so big. Witnessing his 1st birthday was something we prayed for during the darkest times at the hospital early on when we didn’t know if he was going to make it out. But our prayers were answered and here we are. God has carried us through, I truly don’t know any other way to describe it. We have an amazing support system of family and friends, and are reminded every day that we are blessed and He can be trusted. We are definitely not perfect, we have our share of good and bad days...but when we look back at what we went through all we can say is that Father is faithful, present and good no matter what.
Well, thats about it! We will hopefully be a lot better about keeping this blog updated moving forward. Thank you for following and supporting us! Another reminder to follow Brooks The Champ on Facebook, as we update that a lot more often.
We love you!