Today was a fabulous day full of God sends! We only had one episode (Kyle doesn't like me using that word, but I struggle to find another word to describe Skylar's drop in oxygen levels) where Skylar was in the 70s today, but we got the mucous out and she's been great. Her lung x-rays looked much better than when we were first admitted on Monday and we were able to talk to the nutritionist who said Skylar's diet looked good for now - yay!
So this morning, Ashley came to visit and brought me breakfast and a fun basket of snacks! We were able to chat for a while and it was great to see her again. If you can remember to pray for their family, please do so as their 4 year old little girl is still working through losing her little brother just a few months ago... Anyway, they've been such an encouragement and great support for us so far. After she left, I met some of the staff in the tech clinic that we will be working with from here on out to get equipment, deal with sick visits for Skylar, etc.
I have also been working to start a Families of SMA chapter here in GA because there isn't one and there is a huge need for one! Atlanta has Children's Healthcare and is a huge city that people travel to from all over the south east. It's silly not to have a chapter here. FSMA was so great in sending us a care package when we were first diagnosed with toys that Skylar could actually play with and other helpful information. They've given us a car bed on loan for as long as we need it and have been wonderful in their support to us. I would like to make sure that any families that come after us have a place to go to in GA to seek help and advice because I didn't have a clue which doctor to turn to... Luckily, I had awesome recommendations from my pediatrician and other specialists and ended up with a good team of doctors working with us. All that to say, two women - a head nurse here in the TICU and a case manager in the tech clinic were willing to help me out and are actually trying to hold a clinic here in the hospital to educate a lot of nurses and doctors about SMA. They asked me if I would be willing to speak at the event and I said I would love to if it meant helping people understand what SMA means. I think that might happen in August and they might be getting a lot of helpful info from FSMA as well as working with the Hope and Light Foundation...
In the afternoon, two clowns came in with a guitar and played songs and sang for little miss Skylar and she was all smiles, but wasn't sure about the big red noses, lol. After they left, the chaplain came in to meet us and just kind of see how we were doing. As well as can be expected :) Then my mom brought me lunch and as I was taking care of some stuff online (working on re-designing the SMA Space networking site and editing a few pictures) a physical therapist came in to evaluate Skylar.
Let me preface this by saying I put out a call last month to the moms at my church to see if anyone had extra breast milk they had pumped to donate for Skylar since I could no longer pump. I also asked my doula to ask clients of hers that were healthy, not on meds, no STDs, etc. who could donate as well since it would be better for Skylar to be getting some antibodies (even if they weren't mine) instead of no antibodies at all. I think that has helped her fight off infections so far and just offers her unique nutrition as well. Anyway, I got a great response and have been so thankful for the women who have been able and willing to donate. My mom actually went and picked some up for a girl named Sarah who lives in Chamblee for me since I can't travel much. Well today, our physical therapist comes in and my mom says, "hey, I know you" and she smiles and says hi and introduces herself to me as Sarah, the mom in Chamblee. How crazy is that?!?! I thought that was just super awesome that we could meet, I could properly thank her, she got to meet Skylar and help her with therapy.
I was able to be squeezed in at my OBGYN today at the last minute today at 3pm so I left my mom here with Skylar and the nursing staff to get checked out (I have a cyst on my ovary that is causing some pain, but it's nothing serious and should go away on its own). It was great to see Dr. Combs again (the doctor who delivered Skylar) and also the other doctors - Bennet and Kleiss who I have seen for years. They all asked about Skylar and wanted to make sure I was doing okay too - it was just really nice to talk to them all about it... our office just started testing for SMA at the beginning of the year.
I came back after a quick shower at home (definitely a nice treat) and met Kyle, Sarah and Pradeep (two good friends of mine from high school) for dinner in Skylar's room :) she had been given a sponge bath and was in the other cute little dress I brought with us - compliments of the Bodens! I'll post pictures soon because she's just adorable!!! Skylar was happy to see us but was pretty tired from physical therapy and playing with grandma all afternoon so she started crashing early. The home health care company came to deliver an oxygen tank to take home with us, a bi-pap machine, and other supplies we'll need at home. Once the bi-pap had been approved by the engineers here at the hospital, we hooked Skylar up to it and she's sleeping well! We might even get to go home tomorrow since we're using the home bi-pap tonight for a test run if all goes well :) I'll keep you posted!