The whole story...or most of it anyways

OK, so I know that many of you are wanting an update, especially after our impromptu trip to the hospital via ambulance today. I was wanting to get the blog caught up so that my posts would be in order, and not bouncing back and forth to summer and present day, but I have a ridiculous amount o pictures to go through, so that's not going to happen. Eventually the pictures will get posted, but here's the scoop on Dallyce thus far...

As you know, we spent a little time in the hospital back in June, where Dr. Lowry, a pediatric neurologist, saw DJ and was certain that she had Spinl Muscular Atrophy Type 1. They did some bloodwork and sent it away to Ottawa to be tested for this genetic condition. On July 3, we went in to see the geneticist and genetic counselor, and were told that, indeed, she does have SMA1. They gave us the bloodwork, which confirmed that she has no copies of the SMN1 gene. Most people have 2 copies, carriers have only 1.

So, what does this mean? Well, click here for a good website, but I will give some info, too. 1 in 6000 babies are born with SMA. 1 in 40 people are carriers (this means that there is a good chance that many of you readers are carriers, so please get tested before you have children!!). There is no cure. There are 4 types, and Type 1 is the most severe form. Essentially, lower motor neurons are affected, meaning that the nerves that stimulate her muscles are degenerating. Dallyce will never hold her head up, sit on her own, roll over, crawl, or walk. More importantly, her breathing is labored, she will have difficulties swallowing (so far, so good, but we are waiting for a swallowing assessment), and she has a very difficult time clearing her airway. The stats show that most babies with SMA1 die before their 2nd birthday, although many are living longer with what I consider aggressive treatment of respiratory issues. We have an incredible pediatric respirologist (Dr. Lothian) who has been very up front with us about the fact that (barring accidents) a respiratory incident will be the terminal event of her life. Basically, a common cold could end up killing her because she just doesn't have the strength to deal with it.

In the meantime, we have also connected with many other SMA families across Canada and around the world. We had a 'chance' meeting (or a God send!) in downtown Victoria, when we were walking around on our last morning there and walked past a woman pushing a flatbed stroller. We wanted to find out how & where she had gotten that, as Dallyce could no longer ride in her infant carrier car seat, but needs to be laying flat pretty much all the time (she would start to choke and gasp every time she was in her car seat - actually stopped breathing and turned blue one night while I was out at Volleyball camp). So anyways, we wanted to know where she got the stroller, so we followed her in to the Pita Pit and asked her. Turn out her daughter also has SMA1, had just turned 3, and was one of 2 on the entire island! She is the reason we connected with so many families and started getting some info on different treatment options.

OK, so, now we are waiting for some equipment...we have a suction machine at home, which we are using once or twice most days, just to help clear the back of Dallyce's throat. We do chest physio at least once a day to help move the secretions out of her lungs and then suction when they get high enough in the airway. We got a car bed from Families of SMA in Ontario. It basically looks like a bassinet and sits across the back seat of the van, so she can lay flat in it, but is restrained. We can't see or reach her way back there, so it's not ideal, but it is better than laying on the seat with no restraints!! We are waiting for a cough assist machine (which does exactly what it sounds like!!), and a BiPAP (basically a non-invasive ventilator that helps her breathing based on pressures - helps her get air in and get the CO2 out). She will need to have a feeding tube put in, as swallowing will be become difficult and she will be a high risk for aspirating her food, leading to pneumonia, which of course is another one of those respiratory incidents that we want to postpone as long as possible. There are also many other things we will need if she gets older and gets to a point to need them (a stander, for example).

We have quite a team of medical professionals working with us, too. As I've mentioned already, there is a neurologist, respirologist, genetisict, and a pediatrician of course. There are also occupational & physical therapists, dietician, RN, Speech/Language Pathologist, counsellor, social work...I think I've gotten them all covered! We will see the whole team at clinics once a month at the Kinsmen Children's Center in Saskatoon, and as needed (for example, we have been going in weekly to see the feeding team - dietician & OT - for weights and figuring out the best food options for her, as she had lost some weight while breastfeeding. Now we are doing concentrated formula, and it seems to be working!). I think we will be having OT & PT coming to the house as well, but I need to double check on that!

I feel like I'm rambling, but I know lots of you have been wanting more info about our little angel. I hope this is enough, and not too much.

So that brings us to today, more or less. This morning Caleb woke up super early (6:15 - I know that's normal for some of you, but not for us!!) after going to bed very late last night (midnight), so we knew that church was going to be a gong show with him. Plus, I was really tired and just didn't feel like going anywhere, so Clay went to church by himself while I stayed home with the kids. DJ was sounding a little gurgly, as she often does, so I suctioned her a bit, with a little success, but wasn't able to clear whatever was there, so I sat down to do some chest physio on her to help clear it. She was clearly struggling - gasping for air, turning pale...basically looking the way she used to look in her car seat. Not good. So I put her down in the crib, trying different positions to help drain her lungs, suctioning, and I put her oxygen saturation monitor on her. Most of us are likely sitting at around 96-100% sats...DJ was at 82% and dropping. She dipped as low as 66 or 68%, and then settled around 77-83%. Whatever I did, I couldn't bring them back up, which is what was out of the ordinary. Usually if she's in any distress, I'll suction a bit and then she'll be happy again. This was taking too long, so I called Clay and got him to come home. He was home in a couple of minutes, and she was still struggling, although she was starting to make some crying sounds in between her gasps. I got him to call 9-1-1, and by the time the first responders got here, her sats were up to 88-91%. They threw some O2 on her, and she came up right away, and was happy again. Whatever it was had cleared, and the little bit of extra O2 helped her to get back up to normal and get her heart rate back to normal (she had been up around 200). Then the ambulance came and created a nice little scene in our quiet neighbourhood with their flashing lights and sirens! She was happy and back to baseline by then, but we still took her in via ambulance just to have her check out to make sure there wasn't any kind of infection brewing or anything. She was a superstar, and all of her tests were clear. We were back home in a few hours, and she is her regular self - all smiles!

Also, before we left Clay called our friend Louise to see if she could come over to stay with Caleb until my parents could get there (he had noticed that she wasn't in church this morning either), and she was so quick to come over with her little girl - THANK YOU SO MUCH!!! I don't think Caleb even noticed the big ambulance in our driveway...he was having too much fun playing with rocks!! Mom & Dad came as soon as they could, and had lunch/supper here for when we got home.

Oh ya, and when this all happened, I still hadn't brushed my teeth, gotten dressed, done anything with myself, so before the first responders could get there, I was speedy to do those things (don't worry, DJ was already settling, and Clay was with her)!!!

So that's what's up...thanks for all the support we've been given so far...so many meals provided, our house cleaned, free family pictures. It's ridiculous how much people have been pulling together for us. With all the stress of having to make some life & death decisions for our baby girl, not to mention just the stress of having a 3 year old terror and new baby, all of those things really have been a blessing to us. Lots of people have been wondering about financial needs. So far, there are none. We haven't had to pay for any equipment yet, and we don't know what we will have to pay for in the future. If she is still with us when the time comes for me to go back to work, I won't be, so there may be some financial stress at that time, but we can also just tighten up on our budget!

I have to add one last thing. While there have been many "WHY?" moments and wondering where God is in all of this, we still believe with all our hearts that God is in control. We don't have the answers to the why questions and don't understand why God has allowed us & Dallyce to go through this, but I want to be clear that we do not blame God. He has infinite wisdom, and has bigger plans than our own. We are still praying for a miracle, because we believe that He can heal her, but we do not blame Him, nor will we be angry with Him if He chooses not to. Again, His plan is bigger than our own. We believe that He has sent this little angel to touch people's lives and draw people to Him...and we see it in the way that people have come together so much to help us and support us. That's God at work in our lives. For those of you who don't know the Lord, I hope you are catching glimpses of Him through Dallyce and seeing His love at work in His people who are caring for us...it's not a coincidence.