Thursday, August 15, 2013

Late Updates

I don’t even know where to start with the updates.  It’s like ever since I could hold my sweet girl the blog went out the window…and I was doing SO good on keeping it updated!

Evie is doing wonderfully! We just moved into our own house and we are loving it! Evie is now in daycare full time at the same place Gavin goes. The daycare has been nothing short of amazing with all of Evie’s needs. So here is the latest….

Physical Therapy: Evie is part of the Missouri program called First Steps.  She gets a physical therapist to come out and do therapy with her once a week for a very discounted price and even free sometimes.  We absolutely adore our therapist, it’s like she was meant for us! She is so wonderful and energetic, we seriously just love her.  Evie is doing great. She is a little advanced with her head strength so now we are working with her to begin getting used to putting weight on her little legs.  She was diagnosed with Metatarsil Abductus (her feet turn in a bit by her toes).  She does not have clubbed feet, though, which is good! By the grace of God, Evie gained enough strength to begin turning both feet to a neutral position without needing any braces! Take that Spina Bifida!!! She is cuter than ever and I love taking pictures of her doing therapy because you can tell how much she is concentrating!

Bladder Testing:  A few weeks back we took Evie in for more testing on her bladder.  Her renal ultrasound before NICU showed enlarged kidneys so they wanted to check things out again.  Much to our dismay, the test results were not what we wanted.  Her bladder is both overactive and not emptying all the way. She had a UTI from the old urine she was holding back :( poor girl!  We had to start her on Ditropan (medicine to help with bladder spasms) and learn to catheterize her immediately.  I was so upset having to cath her, I thought we were out of the woods with that since she was peeing.  After learning to cath her and seeing it’s not that big of a deal, I am so much better.  IF that’s all we have to deal with, we are doing pretty darn good! Most people (without knowledge of SB) are very confused about the cath’ing.  She does not have anything permanent or a bag or anything like that. We simply insert a small catheter and drain her urine into the diaper and then take it out and throw it away. We use new supplies each time so it really isn’t messy at all. 

We are now having issues with the Ditropan because she is not peeing at all in between diaper changes and when we cath her we get a whole ton of urine so we are trying to trouble shoot and see what the problem is and get her squared away.
Noisy Breathing: So on a side note and totally not related to SB Evie has been breathing SO loud and I mean like so loud it wakes me up at night.  It has been going on for over a month now. We have been to the doctor more times than I can count and the co-pays are beginning to be obnoxious! Every time they told me just to watch it that it was getting a little better. So we watched and watched until I couldn’t handle it any longer.  We got a referral to a pulmonary specialist who at first said we were in the wrong place. He referred us to an Ears, Nose and Throat specialist (ENT) but before we left he ordered a chest x-ray.  Well thank goodness he did because my poor little girl has pneumonia.  Seriously, can this child catch a break??? Isn’t everything else enough?? So, we started her on a new, more potent antibiotic (she was already on one for her UTI) and it seems to be working…or at least I hope so. She goes back at the end of the month for a check up on that.

ENT: So we go to the ENT last Friday and they did a scope of her throat while she was there and awake…good thing Joe took her and not me because I would have been a mess.  She has been diagnosed with Laryngomalacia – the flap over her airway doesn’t work properly.  It opens and closes either not enough or too much depending on whether she is breathing in or out.  She is not at risk to stop breathing but we do need to watch her carefully as her case is considered severe.  If it gets any worse the doctor wants to do surgery to cut off part of her flap.  This also explains her severe reflux which brings me to the next update!

Reflux: So Evie has been puking after EVERY.SINGLE.FEEDING. No matter what we try, sitting her up to feed, keeping her upright after eating, it doesn’t matter. We tried the first kind of medicine for reflux and that did nothing so now she is on Prevacid which seems to help but boy is it expensive! She still spits up but maybe only once a day and not nearly as much as  before. Before, it was puddling up…gross, I know!
We go back to SB clinic on September 4th and the 18th (of course our doctors couldn’t both be there on the same date!) She gets a bunch more tests done to check on her shunt and her bladder. Be praying everything looks good and no need for any  more check-ups for 6 months, that’s our goal!

Medical Bills: Our medical bills are now out of control.  We have applied to all of the state aide we can and we aren’t getting anywhere with it.  We pay almost $500 a month in medical bills and it is quickly draining what savings we did have.  It breaks my heart that my family is in this much strain but our girl is so worth it.  We have started a gofundme page to help raise funds for her medical bills as well as several fundraisers with Thirty-One, Scentsy, Jordan Essentials, t-shirts are in the works, a baby quilt auction and a very sweet friend has offered her time and talent to sell some mini sessions which she will donate all of the money to Evie! Let me know if you want to order from any of those! Our page for gofundme is - or you can just click here thanks for your donations!

Thank you all so much for your continued prayers and encouraging words for my family! God is SO good!!

PS- I really hope to have pictures of her up soon. It will be the longest post of all time and go from birth to current! I promise, I am working on it!

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