We tried to avoid an additional day of needle poking but there is no way to avoid it. Tomorrow Macy will go in to have her blood drawn for her gene sequencing. I really wish we could have piggy-backed it with her appointment next week where she will also be getting blood work. However, next week she will already be getting it done for hematology/oncology, nephrology, and a research study so there is no way we can add an additional 5cc's for the gene sequencing. It will be luck that will get us enough blood for what is already scheduled next week so tomorrow is a necessary evil.
I am most definitely not looking forward to tomorrow. There is a lady and a young man who are AWESOME at drawing Macy's blood (everyone else; not so much which involves numerous stabs, digging with needles, and bruising that lasts almost a month; not to mention lots of screaming on Macy's behalf) so let's hope we get one of them. I am almost to the point of requesting them when we go. I am not sure if we can do that, and I don't want to be rude; but it makes a HUGE difference on who draws her blood. And since she gets it done so often, and has become so anxious about it (almost to the point of a panic attack); I am guessing it will probably be necessary in the future. Next week for her appointment I asked Adam to take off work and be there, because it is a different lab. It is in the hematology clinic, and her blood draw did not go well at all last time so I need him there to help me.
Onto some good news
Macy is still eating great. We are still giving her the OTC prevacid and it is all going well. Her reflux is well-controlled, and on top of that she is a walkin fool! :) In less than 3 weeks she went from taking her first steps to now walking everywhere. She can bend down and pick things up, carry things while walking, and even walk over rough terrain. She loves her new-found freedom, and we love it too! She looks so cute walking around, and I don't even mind that she is into absolutely everything. Well, except the dog food. :) (gross)
Adam and I 'finally' changed her G tube button for the first time last Saturday and it surprisingly was pretty easy. To the point where if I needed to I could do it by myself. Another plus is so far we have gotten through this entire winter without any of us getting sick; including Macy which is the most important. Sometimes I think when we go out to restaurants people think we're nuts because we have our own placemat for her, and cover that goes over the highchair so she doesn't come in direct contact with it, etc. But so far it has served us well keeping her away from all those germs. Despite her FA; she is a very healthy little girl right now. Next week hopefully all her numbers will be normal and we can relax for a couple more months.
In April/May is probably when we are going to actually start our IVF journey. There is some pre-testing that is required on the IVF side of things before we actually "start start". So that will be a good time to do them. I have gone back and forth on if I wanted to share/blog our IVF experience. From what I have read and from those I have spoken to it can be a very emotional and difficult journey at times. I think I will probably end up sharing our experience in the end for a couple reasons:
1) when we were looking into it it was very difficult to find any "real" experiences online to read about to try to get a feel of what it is like including the challenges people faced or obstacles that stood in the way of having a successful experience (meaning resulting in a live birth). So if our experience can help someone else decide if it is for them or not then it is a good thing.
2) I think it will be good record keeping for us on our own journey, and
3) it will probably be cathartic for me especially during the stressful times.
I do have some awesome pictures of Macy but they are not on this computer so I will have to add them later. Hopefully I will have time sometime this week. We have been spending so much time outside because it is so nice...and it is suppose to be 80 next week.....wowwweee! Might have to get the boat out early this year!