I spent Friday evening in labor and delivery again. It was the 3rd time in 4 weeks. I am not liking the trend at all. I felt fortunate to get to come home again though. My doctor seems a little less optimistic with every visit. delivery is looking like it will be earlier and earlier with each time we meet. I am still hopeful to hold out to 30 weeks. I am somewhere between 24-25 now. Please continue to pray for baby Gabe that he will tolerate his environment and hold on until it is safe for him to be born.
Anna's physical therapy evaluation went well last week. Basically, she needs PT but cannot get it through the school because to qualify for school PT, your need has to impact your ability to function in school. Anna will do OK in a school setting. She is just kind of awkward. The PT was awesome though and told me where we could go for private PT if we wanted or if not she showed me a ton of stuff we can do at home. I think given all that is currently going on we will stick with the home stuff for now and see how she does. The Amtryke they are getting her should actually help a lot too so I am hopeful maybe we can keep the PT at home. I want to always do what she needs but anything we can do at home and avoid traveling for is a bonus. Anna's hamstrings are really tightening up and we have got to really work on stretching. The PT also showed me some things to do before bed with Anna to maybe help her sleep better. I started last night and she did seem to sleep well. I do not know if it was the exercises, a fluke, or just her exhaustion from a busy weekend but it did work well. She also told us to get Anna some Under Armour type clothes to sleep in because sometimes the pressure can help with rest. I will do what I can to fit that into the budget as well.
After her PT eval I took Anna to a local Prosthetics and Orthotics (P&O) place. The people there could not have been any nicer and seemed quite knowledgeable. The bonus is that the guy that owns the place used to do P&O for Cook Children's which is where we go. So I feel like I am getting quality work from someone who understands kids without having to drive so far. He fitted Anna with something called Sure Steps. They are an SMO (Supra Malleolar Orthotic) versus an AFO (Ankle Foot Orthotic). It is much smaller and allows for much more use of Anna's own muscles. We will pick them up next Monday and hope for the best. They are for low tone kids which is what Anna is. Anna got to pick out the pattern and they are cute. They have little bumble bees on them. I am hopeful they will help her. He also suggested we get back to the ortho because he thinks part of her problem is coming from her hips. The place is called Alliance Prosthetics and Orthotics and I just do not have enough good things to say about them.
Anna's follow up from eye patching is next week. Her eye does not seem much better to me except when the patch is on. On one hand I would like to patch a little longer and see if it helps but then I look at the financial side and if we go ahead and have the surgery this year it will be paid at 100% because we have met our total out of pocket. I will be interested to see what Dr. Norman thinks. I am pretty sure he said if the patching had not fixed things by her next appointment that it wouldn't help but I cannot remember for sure. I've slept since then.
I am also taking the girls to the dentist next week. Carly has a cavity that has to be filled. She does well and actually likes the dentist. Anna is having her first cleaning. Please pray for the dentist, this should be fun...
My son has had Sure Steps for about a year and half now. He likes them, he is on his 2nd pair, and might have outgrown them as well (he got them when he was young, so he outgrows his faster than normal which is ironic).
ReplyDeleteAs far as PT and the school, I agree and disagree. Will Anna have to go up/down stairs at school? Can she remain standing if other kids bump into her? How will she be able to do in gym class? Will she be able to keep up with her peers on the playground?
As far as surgery sooner or later with the co-pays, won't you meet your deductible next year between you and Gabe? If so, does it make a difference if you meet it a little sooner or later with Anna's eye surgery?
Lots of prayers for your and Gabe's health.
Thinking of you! <3
ReplyDeleteJamie - I just need to say you inspire me! You have so much going on I don't know how you manage. You are amazing! I can't imagine how scary this pregnancy with Gabe must be for you - I am praying for a nice 34 weeks!
ReplyDeleteRuby- I am glad to hear the Sure Steps have worked well. I only know one other person whose child has them so to hear of another is helpful. Is it wierd that I am excited for her to get them on Monday? I am. On the whole PT thing- I totally see what you are saying. The only steps she should have to work with are on the bus and that will only be in the afternoons. I always take them to school in the morning. She does ok now with other kids but they are all her size. I will wait and see how she does when mixed with kids of other sizes. I will not hesitate to fight for PT if I see she is not doing well in the school environment. I am conflicted about the surgery but am really trying to reserve any decisions until after her appointment next week. Thank you for your prayers!!! We need all we can get.
ReplyDeleteLaura- I think of you often too and pray things go smoothly for you. I am so excited that you seem to be doing well so far and I pray for a long and boring at least 37 weeks for you. I know the holidays will be hard for you and I pray for peace for you and your husband.
Jamie- (the other one) I cannot believe how fast Lou is growing. He is so cute! I also think of you often and know that Lou does not replace Vincent and that the holidays must also be hard for you. I'm really not that amazing- just a mom who loves her kids and will do anything for them. You know how that is...