Tuesday, February 24, 2009
The most recent updates:
It looks like we might receive Medicaid this week! Turns out our MDCP caseworker didn't file back in December like she said she did--I suspected all along. But our application is being expedited so everything is going to work out fine. Still, I am writing letters and insisting on a new caseworker!
You are still only a tiny 11.6 lbs. Haven't gained an ounce in the last three months. You need to get on that Sweet Pea! You are almost 9 months, and this is the age we were shooting for to do the cleft palate surgery. But you have to weigh at least 15 lbs, so it will be put off until you get to growing!
Today we did a swallow study at TCH. However...it wasn't until after that I started to realize I went about it all wrong. I have been preparing you the last couple of days for this test by doing all your exercises extra--playing with your mouth a lot, practicing drinking .5 mls at a time, holding you in the feeding position, and stretching out your neck. You are so averse to something going in your mouth, I was afraid we wouldn't even get to put the barium in your mouth before you would vomit. So when the time came, I slipped the syringe into the side of your mouth and distracted you with your favorite toy, your singing reindeer. You swallowed like a pro and we got images of several good gulps. They gave you the go ahead to start practicing drinking small amounts of a thicker fluid. It wasn't until we were finished and you were back in your stroller that you started to cough and gag on what was left in your mouth. Your face turned red, you sputtered, and threw up. And that's when it dawned on me. I know you can swallow--I watch you do it all day involuntarily. You never drool, not even really when you are teething. My concern is when you are forced to swallow and you panic--that's when I am not sure which way the fluid is heading. So instead of trying to get pictures of you at your best, I should have let you do your worse. That way I would known not to worry when the inevitable happens and you choke. I wasn't even very hopful to get the contrast in your mouth--I never expected you to handle it so well! Live and learn; we will be prepared next time.
Still no eye surgeries planned. I cancelled the contacts thinking the surgery would happen any day. And now with the Medicaid on the way I might as well wait so they will pay for it. But I wish you could see me! I can't wait to see the recognition on your face when I walk into a room, or for you to reach out to me when I am near.
That's about it for now! Mama has been sick these last couple days. It is so hard for me not to be in your face, kissing you all the time. I especially miss our early morning cuddle time. You are just the cutest thing--I probably tell you a dozen times a day how beautiful you are.
Friday, February 6, 2009
I spent the day getting ready for your surgery Monday. We went to the med center to sign consent forms, I called everyone who was involved and asked for cash prices, then paid them, and called the hospital to get pre-op instructions. And then I got the call. One guess what the surgery scheduler said.
That's right. We have been cancelled again.
In order to coordinate both surgeons your surgery needs to be the first one of the day. The hospital won't give us the time slot, so one of the doctors isn't able to operate. I explained to the surgery scheduler the situation with your contacts and how we have put them off for 6 months. I asked if she thought I should go ahead and get them regardless of when the next date was scheduled. She told me no, that they the next scheduled date and time would be put in writing with the hospital, and that it would be a go. She understands that this has been put off long enough and is priority now.
I am not surprised it has been cancelled again. I did think this one had a better shot since I made the effort to make sure everyone had their money in advance. Before surgeries had been cancelled because someone was afraid of not getting paid.
But I am not upset either. I knew this was a possibility, and am still hopeful that the surgery will take place in the next couple weeks.
Oh goodness, you just woke up from your nap screaming. That is not like you at all. I can only imagine what kind of mood you will be in when I tell you there is no surgery Monday!
Thursday, February 5, 2009
I insisted the doctor at least tell us this personally. I was so upset that she didn't even have the courtesy to honor our appointment, admit they had a misunderstanding and let us slip through the cracks, and apologize for the inconvenience. Had they done that, I still would have been disappointed since I was so looking forward to you being able to see, but I wouldn't have felt insulted on top of it. Not only did she want to send us away from the waiting room, but she wanted us to come back in a couple weeks for another fitting! I told her she could use the measurements from last time, order the contacts, and we would be back in two weeks. As we left you cried--you were sad not to have contacts also.
All Tuesday I was frustrated. I can't understand why appointments and surgeries continually get put off when it comes to your eyes. Nothing has been accomplished in the last 6 months. I find it unbelievable howlong we have been strung along.
But God is good and He has a plan. Yesterday morning I woke up to a call from our ptosis surgeon, saying that surgery is on for Monday. I am cautiously optimistic. I am tired of being played the fool, getting excited for surgeries that never come, but I have reasons to be especially hopeful for this one.
We have 90 days from the day we order the contacts to return or exchange them for any reason. You won't be able to wear contacts for four weeks after the surgery--if the contacts had been ordered two weeks ago then we would have lost half our time to play with how they fit; and they are much too expensive to buy multiple pairs. So, we have put the order on hold until Monday when we see if the surgery happens.
Even though our time frame may still be different than His, we know God's timing is perfect. But if there is one thing Mommy and Daddy are learning from all this, it is patience!
Monday, February 2, 2009
We went a couple weeks ago for the fitting. When we walked in, the doctor told us it was highly unlikely to get an accurate measurement on a baby. You have to keep your eye completely still, and she has to keep her hand holding the machine completely still. You did so well, didn't fuss or protest and looked directly at her. The machine wasn't reading, so we took a break, and she told us how we will care for the contacts.
She said she would guess what size Audrey would need, and we have 90 days to exchange or return them for any reason. These contacts are soft on the edges, but hard on the inside, so we can't pinch them out. It would crack the middle. So we will have to pick them up from the edges once a week to give your eyes a break overnight. When you have your ptosis surgery that will change to daily. Unlike adult contacts, these won't have any blue tint at all, so they might be hard to keep track of--which is too bad because they are supposed to last a year. After we talked she started walking us to the door, and I asked her to try one more time before we left. And she got it!
So tomorrow Daddy will meet us at the doctor and we will practice putting them in and our for an hour. She insists that it isn't very hard to put them in and take them out. Funny thing was that she said the hardest part is overcoming our fear and squemishness. I looked at Mema who was with us and laughed. I told the doctor, "We have had to do much worse than this--this will be a breeze!" I hope you don't prove me wrong.
I can't wait to write you tomorrow and let you know how you react to the world around you. Since you won't keep your glasses on your face, you rarely get to see anything at all. You are in for a big surprise Audrey Boo.