Hey sweet baby, I missed you today.
This morning I left home early for a house closing, and Honey came to stay with you before you even woke up. I came home a little after 2:00, and I had an hour and a half at home before I needed to leave for swim team practice. Of course, it was during your nap time. And when I made it home a little after 8:00, Daddy had you all tucked into bed. I have a whole new respect for working moms! It is tough to see you so little. I love and am grateful for both the real estate and coaching jobs, but the next few weeks are going to be hard on us until the school year ends and summer starts up. We just have too much going on during the week.
Daddy left for the gym, and you started fussing. I like to think it was cause you missed me too. Usually we don't come running when you call out from bed, and so usually you don't call. If you are in your crib, you know it means sleep is your only option. But tonight I just had to go pick you up and cuddle my baby for awhile. After a few minutes we both felt better and you were able to go to sleep.
Which is a good thing because you need your rest for tomorrow! Finally we are having your ptosis surgery! The OR is scheduled for 7:30, so we need to be at the hospital by 5:30. That 4:30 alarm won't make any of us happy, but you are going love the difference when you won't have to hold your head back to see. So sleep sweetly, love. It might not come as easily tomorrow night.
Thursday, April 23, 2009
Friday, April 17, 2009
April 17
Look who's the biggest baby, practicing eating her prunes!! (Yes, prunes. I am hoping if I can get you to eat a daily serving, then we can cut the Miralax.)
You seem to like them...they are good and messy. I am pretty certain some of them actually got in your mouth!
Tuesday, April 14, 2009
April 14
You were so cute for your first Easter!
We went Saturday night to see the Easter Bunny in your bunny hat that Aunt Shelby gave you, but the line was super long and the bunny...not so cute. So we just waved to the bunny and went shopping for your Easter dress instead.
Sunday morning the Easter Bunny dropped off a basket of goodies for you--a couple toys, hair bows and ties, and some candy. I guess Mr. Bunny didn't know that you don't like chocolate, so Daddy and I have to help you out there. Then we got all dressed up for church, put your hair up for the first time and you looked "faaabulous daaarling".
We went Saturday night to see the Easter Bunny in your bunny hat that Aunt Shelby gave you, but the line was super long and the bunny...not so cute. So we just waved to the bunny and went shopping for your Easter dress instead.
Sunday morning the Easter Bunny dropped off a basket of goodies for you--a couple toys, hair bows and ties, and some candy. I guess Mr. Bunny didn't know that you don't like chocolate, so Daddy and I have to help you out there. Then we got all dressed up for church, put your hair up for the first time and you looked "faaabulous daaarling".
After church we went to Papaw and Grammy's house for Easter lunch and had a great time. When we got home late Sunday night, Daddy and I went to take out your contacts, and the left one wasn't in there! We looked and looked, but it is just gone. So today I ordered another one, but most likely it won't be in for a couple of weeks. By that time you will have had your ptosis surgery and won't be able to wear them for quite awhile anyway. I am so dissappointed. The good news is that the sty in your right eye has cleared up, so I am praying we will still be a go for surgery on April 24th!
Monday, April 6, 2009
April 6
Hi my big girl! As always, things are changing quickly with you.
We have made the permanent switch to formula. It is going fairly well. As expected, you immediately became constipated from it, so you are on a daily dose of Miralax. It also has made you vomit more often, and at a higher volume, which is rough. The worst part for all of us is when you wake up sick in the middle of the night--usually at least twice. But we didn't really expect you to make a seamless transition. Formula intolerance is just another part of the syndrome. Yuck.
We have been practicing eating orally, and you have been doing such a good job! Thicker foods, such as thin rice cereal seem to be the easiest for you. I am most pleased with the way your tongue goes toward the cheek the food is in. You seem to really want something in your mouth, and chew on Lambie, your sleeve, a burp rag, your hand--whatever is convenient--most all day.
A little over a week ago we did another glaucoma exam under anesthesia. Always the trooper, you came out from the OR not feeling too badly. Your IV was infiltrated, and your left arm is still swollen. Other than that it went as well as we could hope for. No operation was needed, and we don't have to do another EUA until December.
We have gotten your new contacts and you are loving them! You are so much more active and alert, reaching for more things and having better coordination. A sty developed in your right eye over the weekend, so the contacts are out until that heals up. Boo.
You are becoming a silly girl, with a sense of humor the rest of us can't quite figure out. Something will make you laugh one minute, but when we try to recreate it, it just doesn't strike you as funny anymore. We live for those laughs--truly the most beautiful sound to our ears.
We have made the permanent switch to formula. It is going fairly well. As expected, you immediately became constipated from it, so you are on a daily dose of Miralax. It also has made you vomit more often, and at a higher volume, which is rough. The worst part for all of us is when you wake up sick in the middle of the night--usually at least twice. But we didn't really expect you to make a seamless transition. Formula intolerance is just another part of the syndrome. Yuck.
We have been practicing eating orally, and you have been doing such a good job! Thicker foods, such as thin rice cereal seem to be the easiest for you. I am most pleased with the way your tongue goes toward the cheek the food is in. You seem to really want something in your mouth, and chew on Lambie, your sleeve, a burp rag, your hand--whatever is convenient--most all day.
A little over a week ago we did another glaucoma exam under anesthesia. Always the trooper, you came out from the OR not feeling too badly. Your IV was infiltrated, and your left arm is still swollen. Other than that it went as well as we could hope for. No operation was needed, and we don't have to do another EUA until December.
We have gotten your new contacts and you are loving them! You are so much more active and alert, reaching for more things and having better coordination. A sty developed in your right eye over the weekend, so the contacts are out until that heals up. Boo.
You are becoming a silly girl, with a sense of humor the rest of us can't quite figure out. Something will make you laugh one minute, but when we try to recreate it, it just doesn't strike you as funny anymore. We live for those laughs--truly the most beautiful sound to our ears.
Tuesday, March 24, 2009
Contacts!
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.
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.
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.
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