We signed up for the International Fanconi Anemia Registry (IFAR). They need 5ml of blood as well as her normal blood draw so they need to try to get about 10ml's of blood this next time....good luck with that. She always flows so slow we have a hard time getting the 3-5ml we usually need so I guess we will see if we get it. But it is important to get her sample to them so they can maybe start the gene sequencing. That is our backup plan if Insurance doesn't cover it. The registry will do it for free since it is for research; but there is no guarantee they will analyze it any time soon as they are on their own research timeline and not ours.
We had a nice Thanksgiving with the family. Macy had fun playing with her cousins. She loves other children, and is usually in awe of them whenever she is around them. Her gross motor skills are coming along too! She is at the stage where she is comfortably cruising furniture, and can stand solo for a few seconds. I am very proud of her and the progress she is making!
Christmas is only a few weeks away; I can't believe it. I do have all of my shopping finished so that takes a lot of anxiety off for a bit. Thinking about Christmas though reminds me that one of my favorite fundraisers is coming up Dec. 15-17. Every year for the past 10 years, 105.7 FM has the "Think Outside yourself" radiothon to raise money for the Devos Children's Hospital Foundation here in GR. When I first heard this fundraiser it had me in tears. Thinking of all the children and families that spend so much time in the hospital for a variety of reasons. The stories shared were so sad. Little did I know back then that we would be one of those families now.
Devos does so many great things for kids to try to make their stay comfortable whether they are inpatient or outpatient. I don't think people realize all the little things and supplies they need: from the LED lights on the ceiling in the ultrasound room to keep children's attention while they are getting poked and prodded, the light-up toys they use to distract them while getting needles poked into their little bodies or the crib toys they let us borrow while Macy was in the hospital. All of these things are possible due to donations; and it is the little things that help tremendously. There are families from all over the state (even out of state) that have children there long-term. A few gas cards or a meal voucher makes a huge difference. I remember the first time Macy was hospitalized there. We were so distraught with everything that was going on. Having a meal voucher was a big deal. When she arrived it was by ambulance, and even though it was non-emergency (she was transferred from another hospital and since she had an IV it had to be done via ambulance) I will never forget what it looked like seeing her in her little infant car seat being strapped to a stretcher to be put in the ambulance. Anyways, I hope they continue to do what they do for kids, because it is a great thing.
Here are some recent Macy pics!
|Getting ready for Thanksgiving!|
|Loves standing up!|
Oh yeah, one more thing. Our first IVF consult appointment is Monday. I hope it goes well.