Skylar turned 19 months old on the 19th this month which was pretty exciting. Not only was it her "birthday" but it was also Father's Day and Skylar had a special present saved up for her Daddy! That's right, we finally have the beginnings of a tooth poking through - her top front right one!!! I can't wait for it to come in more :) Kyle has been such a great dad and it's such a blessing that we both were able to celebrate a second Mother/Father's Day with Skylar. We thought SMA was going to rob us of that, but Skylar is such an amazing little fighter. Kyle has actually been traveling the whole month and has only been home on weekends (which is partly why I have not posted anything in a while). He has been working so hard to keep up with his job, the high work demand and time commitment, and I am so proud of him because he's doing such a great job!!! I know it's hard on all of us when he travels, but we're so thankful that he has a good job that pays the bills and allows us to have good insurance. Here's Skylar in her "Sweet Like Daddy" dress that I altered to fit her better :) The sewing is coming along great and hopefully I can start making things from patterns soon!
I feel like the two weeks leading up to Skylar's 19 month birthday were rough. Our nursing company dropped the ball and didn't re-apply for more nursing hours soon enough so we had a lapse in coverage for a couple of days until more nursing help was re-approved. Thankfully, our nursing company worked their butts off to try to push it through as fast as they could so we only had a few days without Nurse Natalie instead of weeks. Normally it wouldn't be too bad, but because Kyle was gone traveling, it was a much bigger deal. Medicaid surprisingly got the paperwork approved first so they are covering our nursing now!
We're finally in the next step of getting the Trilogy bi-pap approved and hope to get in the hospital in the next week or so to adjust the settings and make sure Skylar gets what she needs. We're really excited about the new company supplying the equipment because they seem very customer service oriented and are friendly. We've had some bad experiences in the past with two other companies which makes my life a lot harder because I have to make phone calls, get upset and argue with people to make things right. I am hoping for a lot less of that. It seriously baffles me sometimes how certain companies can stay in business!
Anyway, for the past two weeks, Skylar has been struggling with something. A week ago, we had an extremely scary night when I was doing a normal treatment with Skylar and "coughing" her with the cough assist machine. Normally, I would say this machine saves her life on a daily basis and is the mac daddy piece of equipment when it comes to emergencies. However, last Thursday, I was using the cough assist and Skylar's oxygen saturation was dropping at an alarming rate... 70s, 60s, 50s, 40s, and with each second she turned whiter and whiter. We hit the 20s while I was still coughing her and I slightly panicked. Her heart rate started dropping as well and I think I said, "Stay with me" or something like that while trying to figure out what to do next. The cough assist usually moves anything blocking her airway, but I wasn't getting anything when I suctioned her. I was at a loss. I quick turned the bi-pap on threw the mask on her face. Slowly, her oxygen started coming back up, but the color took a little bit longer to return to her body. That night, her oxygen kept dipping into the 80s (which causes the alarm to go off) every two hours or so. I knew there was still a big mucous plug in there waiting to show it's ugly face again. Thankfully Kyle was going to be home the next evening and could help me over the weekend.
As Kyle was unloading his car on Friday, instead of opening the door to hug him and tell him hi, I flung open the door and yelled "I need your help now!" Skylar was dropping again and I needed an extra set of hands to get the oxygen tank flowing in case she dropped so low again. We've been much more aggressive with her treatments (chest PT, nebulizer meds to help open her airways, etc.) since then and Saturday we were able to get some of the chunks of mucous out of her lungs. I think today I got the last little bit that was clogging her airways because her oxygen level has been much better. We're still not where we were, but hopefully we can recover fully soon. We also just got approved to trial a "vest" that will help shake mucous loose and will become a part of our daily routine. Usually kids have to be 20lbs, but Skylar's not quite there... However, her chest diameter is at the minimum requirement so we're going to test it out and see how she tolerates it. My friend with Cystic Fibrosis has been using a vest for a long time and it's helped her tremendously so I am actually kind of familiar with it!
Skylar's been on bi-pap the past two weeks, pretty much non-stop, because we thought she might be fighting a sinus infection or a cold of some sort. It very well could be, but I also think that her teeth has something to do with it. Now that the front one is wiggling it's way through, I am hoping the others will figure out how to bust through as well. Skylar has over 10 teeth that are seriously ready to come through and it must be so painful - especially when you can't pick up stuff to chew on and ease the pain. We're giving her children's Motrin now and have been massaging her gums for some time. We'll see what happens!
Before she "crashed" two weeks ago, we were able to get some pictures of her with the goodies I won from the Gwendolyn Strong Foundation Mother's Day Giveaway. Her teeth are making her unhappy, so sorry for the not so happy face. It was really fun to get a box full of items for me and Skylar. Some of the stuff is not pictured, but we're enjoying all of it! Thanks so much for all of the vendors who donated to make a special giveaway package and help raise money and awareness for SMA!!!
It's so fun to observe her becoming such a big girl. She's about 34 inches long now and would be up to my hip if she could stand up!!! Her hair is developing into a pretty awesome mullet (I don't have the heart to cut it!!!) and she just looks like a little girl instead of a baby. I am so excited to see the rest of those teeth - I know she'll look even older!
For Skylar's 19 month birthday, Kyle, being the awesome dad that he is, built her a swing for her room!!! We have been trying to figure out how to make a swing/hammock for Skylar that would support her so she could still lay down and keep her body flat, but something that would move like a swing that could hang from our ceiling. Well, Kyle made it for his little girl on Sunday and it's awesome :) We still have one last finishing touch on it before we post pictures, but I'm so thrilled Skylar can swing now!!! We're working on logistics with her on the bi-pap machine while swinging, but it's so fun!
EXTREME UPDATE*** Extreme Makeover Home Edition is coming to Georgia in 17 days!!! They announced it on their facebook fan page last week. We have no clue what family is chosen and where they will be building, but we're hoping they show up at our door on July 10th! Regardless, they will be helping a family in need so if you want to get involved and possibly be on tv, check out the GA Build website.
More to come soon - I just had a moment to get you up to speed on things. Hope more can follow shortly. Peace.
I love life. Even when it's not always great, it's better than not having it.
I started this blog as "expecting the unexpected" and didn't even know what was ahead! I was surprised with a pregnancy, delivered a beautiful little girl in Nov. 2009, and was later surprised with a diagnosis of SMA (spinal muscular atrophy) type 1. The Night Shift post in March 2010 is where the SMA journey begins... Our sweet girl went to Heaven on August 16, 2011 and is where Skylar's journey ends; however, ours carries on.