You have had your contacts for a week now, and it's like you have discovered a whole new world! As soon as we left the doctors office, I could see a difference in the way your responded to things. Over the past several months you have gotten pretty good about keeping your eyes still in your head, but there has always been a glazed look that says you aren't focusing on anything. As I strolled you out of the office, I watched you looking at a red clamp on the side of your stroller--and you were really seeing it. In this past week your facial expressions have become more animated, and you are starting to think things are funny on your own. In the past you would smile, but only when prompted. A couple days ago you actually laughed again for the second time. Daddy and I aren't sure what was so funny but something definitely tickled you.
And today, you thought you were so cute (you are), and were playing a cat and mouse game with me. Right now you aren't too big on eye contact; I think it wears you out. So you will only look at me for a couple seconds and then would look away. So I was laying next to you and when you looked away from me up at the ceiling, I would say, "Pssst!" You would cut your eyes in my direction, but not turn to look at me, and get a mischievous little grin on your face. You knew exactly what I wanted you to do, and just were not going to do it! Stinker baby!
It isn't as hard as I thought it would be to put in and take out your contacts. Last week we went to pick them up, and Daddy met us there. Before we could leave with them, Daddy and I had to demonstrate we could put the contacts in and take them out on our own. So I went first, and put in your right contact on the first attempt (even though you did your best to make it difficult). Then I tried for the left eye...and tried and tried and tried. Just couldn't do it. You were throwing a fit, which I don't really blame you for, and I finally handed it off to Daddy to try. First time, he got it in! I thought, "Well, that's just beginners luck for the both of us." Next we had to take one out. Since I had already traumatized the left, we went for the right. Daddy took it out, no problem, and I popped it back in, no problem! So now we have a system. Daddy does the left eye and I do the right.
These contacts you are wearing are not the right prescription. You need +25 and they are only +20. Our goal is for everything within an arms reach of you to be clear, since that is where most of your world takes place. Next Thursday, when the right prescription comes in, you should have the same vision as any other baby your age. Until then, these are better than nothing.
Still, I can't wait to see how much more of a difference the next set of contacts makes to your level of alertness and interaction. I am anxious for you to start reaching for things, recognizing my face, learning. You really are such a smart baby, and I know that once your eyes are finally corrected, you are going to improve leaps and bounds.
Daddy and I love you.
Tuesday, March 24, 2009
Friday, March 13, 2009
Rolling Stone
You have been rolling toward the right for over a month now! You are getting better and better. At first you could only roll from your side to your tummy. But last week you rolled from your left side to your back, to your right side to your tummy. It took awhile but you did it...that is 75% of an entire roll! You haven't quite figured out the technique to roll towards the left. And it is going to take some upper arm strength for you to make that last step from your tummy to your side. But you try a little harder everyday.
Your legs, on the other hand, have no problem moving. You look like you are running in place most of the time! Especially at night. You and I, we aren't so into early mornings. We like to sleep in late and stay up even later. So most of the time we take the mornings slow and then rev up for the evenings! Daddy is the oddball in the family who likes to be in bed early and rise with the sun. We try to be respectful of that...but SOMEBODY I know isn't always so easy to rationalize with and doesn't feel tired at night. (It's you.)
Friday, March 6, 2009
Costly Mistakes
Good news...we got your Medicaid last week! As of now, they are only willing to back pay until Feb 1 of 2009. All 8 of your surgeries, 10 weeks of hospital stay and every diagnostic test imaginable (sometimes twice) was done in 2008. So we are going to contest it on the basis of our caseworker not filing your application when she said she did. But the important thing is was I was able to move forward with scheduling surgeries for you!
It has been discouraging how slowly things have been going lately. Your glaucoma EUA is March 27--that isn't a big priority because everyone is pretty sure your glaucoma is stable and they won't need to operate.
I asked the optometrist to order your contacts again last week, but it still hasn't been done. They say they are waiting for approval from Medicaid, but I don't think they are being very diligent about hurrying the process along.
And the next date available for your ptosis surgery (which is what we are most anxious for) is April 24. I scheduled it Feb 25. Two whole months away. You will almost be 11 months old by that time. And that's assuming this one actually happens. I have no guarantee it will.
I feel like I have let you down when it comes to your vision. It hurts my heart that at 11 months old you still won't be able to hold your head up--which means you also won't be able to sit or balance. And it also makes it extremely tough to teach you how to swallow with your head always back. I don't even know how this has taken so long. We have been strung along a few weeks at a time, and it has added up to 9 months. I know it is partly my fault. There have been weeks, especially over the holidays, that I didn't check up on how things were going. I should have called every pediatric ptosis surgeon in Houston until I found one willing to do the surgery ASAP. After our first few surgeries were cancelled, I should have known better than to trust anyone, and gone with my instinct of ordering your contacts months ago. And when your contacts weren't ordered the first time like I was told they would be, I should have made such a fuss that they would order them rush delivery. I am the only voice you have, and I haven't been loud enough. I am so sorry.
But since I didn't do any of that, all I can do now is learn from my mistakes. I feel like maybe I should still try to find another surgeon, but I really have a lot of confidence in Urso, and want him to do the surgery. I am asking to schedule a back up surgery the week after April 24, just so that we don't have to wait another 2 months if it is cancelled again. And I am calling daily until your contacts have been ordered. By your first birthday, you should be able to see like any other baby. And in the meantime I am going to trust that God is going to do good things for you, despite my inadequacies.
It has been discouraging how slowly things have been going lately. Your glaucoma EUA is March 27--that isn't a big priority because everyone is pretty sure your glaucoma is stable and they won't need to operate.
I asked the optometrist to order your contacts again last week, but it still hasn't been done. They say they are waiting for approval from Medicaid, but I don't think they are being very diligent about hurrying the process along.
And the next date available for your ptosis surgery (which is what we are most anxious for) is April 24. I scheduled it Feb 25. Two whole months away. You will almost be 11 months old by that time. And that's assuming this one actually happens. I have no guarantee it will.
I feel like I have let you down when it comes to your vision. It hurts my heart that at 11 months old you still won't be able to hold your head up--which means you also won't be able to sit or balance. And it also makes it extremely tough to teach you how to swallow with your head always back. I don't even know how this has taken so long. We have been strung along a few weeks at a time, and it has added up to 9 months. I know it is partly my fault. There have been weeks, especially over the holidays, that I didn't check up on how things were going. I should have called every pediatric ptosis surgeon in Houston until I found one willing to do the surgery ASAP. After our first few surgeries were cancelled, I should have known better than to trust anyone, and gone with my instinct of ordering your contacts months ago. And when your contacts weren't ordered the first time like I was told they would be, I should have made such a fuss that they would order them rush delivery. I am the only voice you have, and I haven't been loud enough. I am so sorry.
But since I didn't do any of that, all I can do now is learn from my mistakes. I feel like maybe I should still try to find another surgeon, but I really have a lot of confidence in Urso, and want him to do the surgery. I am asking to schedule a back up surgery the week after April 24, just so that we don't have to wait another 2 months if it is cancelled again. And I am calling daily until your contacts have been ordered. By your first birthday, you should be able to see like any other baby. And in the meantime I am going to trust that God is going to do good things for you, despite my inadequacies.
Tuesday, February 24, 2009
February 24
It has been so long since I have written you. Partially because nothing has too new has been happening, but also because we have been super busy just doing the normal stuff.
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.
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
Psych Out Surgery
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
February 5
Tuesday did not go as planned. As Honey said, after the day was finished, "Santa only brought us a lump of coal." This morning Honey came to pick us up, we drove to the med center, Daddy took off work since we were told he needed to be at the contact fitting, I cancelled a PT and VI session and we all sat for half an hour in the waiting room...then the optometrist had the receptionist come tell us to reschedule and send us home. Turns out the woman who first fitted us two weeks ago doesn't work there anymore and never ordered your contacts.
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!
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
Febuary 2
I feel like a little girl on Christmas Eve, anxious for Santa to come. In the morning you and I are going to the doctor and you are going to get...contacts!
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.
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.
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