Tuesday, November 25, 2008

November 25

You are such a good kisser! Most babies give open mouthed kissed, but not my baby! From the very beginning I would kiss your lips and long after I pulled away I would see you instinctually pucker. Then one day when I came home from running errands Daddy dropped the bombshell—he told me you had kissed him back. It took him a while to convince me that you had in fact kissed him, simultaneously, while his lips were on yours. And when he did I was disappointed. I had so wanted to be the first kiss. I asked Daddy why you would kiss him and not me. And then he showed me. All he did was kiss you and wait until your delayed pucker caught up. Cheater! Brilliant cheater!

So what do you think I did? I kissed you like that dozens of times every day. I kept thinking that if I did it enough you would get the hint that my lips weren’t going anywhere until you kissed me back. Within a week or two you had it down! For the past couple of months Daddy and I kiss you all the time and your response is immediate. What a smart kiddo you are!

But within the last week your kissing has gotten sloppy. Once Daddy came home from work and you wouldn’t kiss him hello. Instead, when you felt his lips, you opened your mouth in a crooked grimace. He and I looked at each other wide eyed and wondered what was going on. We got worried because we didn't have any documentation. I thought maybe you just weren’t in a kissy mood, and sure enough later that night you got your groove back. But the next day you were hit and miss again. Now I think I have figured it out. I used to tickle your mouth to jumpstart a smile—I am pretty sure that I have thoroughly confused you so that you aren’t sure what I want when I touch your mouth. But really, I will take either one—a smile or a kiss will both make my day. In the meantime though, we are taking lots of smoochy pictures while it lasts.

Friday, November 14, 2008

November 14

I forgot to tell you last week with all the ptosis drama...

We had an echo done and it came back without any detection of an ASD or PDA! Jesus healed your heart!

November 13

Today your caseworker for Texas Department of Aging and Disabilty Services came to do your in home evaluation. Back in August I applied for MDCP—Medically Dependent Children Program through the DADS office. It is a Medicaid waiver program based on the child’s income alone (zero) with a very long wait list. If the child meets the necessity criteria for admission to a nursing home this program provides financial assistance for them to be able to live at home instead. The Money Follows the Patient (MFP or Rider 28) program is a way to bypass the long wait list. It works by putting the child in the nursing home for 30 days and when they are discharged the money (Medicaid) literally “follows the patient” home until 21. With a letter from the primary care physician stating a nursing home stay isn’t appropriate for the child (as in your case since you need constant supervision) the mandatory 30 day stay can be shortened to 48 hours.

So after three months we are still at the very beginning of this long process. Our caseworker estimates it will take at least two more months, probably three for everything to be finalized. But the very cool thing about all of this is that through this program we are required to have a predetermined amount of respite care each month paid for by Medicaid. Anybody of our choosing can be an “attendant”…even grandmothers! So when Grammy and Honey and Mema come over to help me by spending time with you, or ride with us to the hospital, they will now be paid to do it. Win-win for everyone!

November 12

This afternoon you were lying on the couch next to me, and had your glasses on. I was asking you to smile like I have a hundred times over the past week. When I started to sing Stevie Wonder’s “Isn’t She Lovely” you made eye contact with me and smiled! Happy tears immediately flooded my eyes but I didn’t stop singing or smiling because I didn’t want to break the spell. When I smiled bigger, you smiled bigger! A couple of times your eyes wandered away and your smile dropped a little. But as soon as your gaze returned it came back better than before. And it lasted forever—probably a good 15 seconds! I know that doesn’t sound like a lot of time, but I have been waiting 5 long months for that smile. If it had lasted an hour my heart wouldn’t have swelled any more.

Of course, I tried recreating the moment to show Daddy—you didn’t think my singing was as funny the second time.

November 10

This morning we went to our doctor appointments with Aunt Paula. First stop was to meet our new ptosis surgeon, Dr. Urso. We all liked him so much! Aunt Paula says he has the four C’s: Common Sense, Calming, Confident and Connected. She is so silly. When we explained the Medicaid situation to him he said not to even worry about it. If Medicaid didn’t cover it, he wouldn’t charge us for his portion of your surgery. How totally different from the other doctor! I wouldn’t ask him to do it free of charge, I definitely want him to get paid for his services. I just want someone to do it! So his surgery scheduler is supposed to contact me this week to set something up.

Then we went to TCH to meet with renal. Your blood pressure looks good! So we aren’t changing your meds any for now. He was going to do some blood work, but when he saw you had a surgery coming up he postponed it. Blood will be drawn pre-op and he can have his labs done at the same time, so you and I both appreciate his avoiding an extra stick.

Then we had a special treat of getting to eat lunch with Maria, one of Aunt Paula’s friends who works at TCH. Maria came to visit you during your stay in the NICU and gave you a CD she and her husband created. It is Maria you hear praying over you on your iPod, and her husband who is playing those beautiful versions of classic lullabies. Definitely our favorite night time music! I think you are smiling in this picture because you recognize her sweet voice!

Sunday, November 9, 2008


You are five months old today, andI can't believe how much you have grown and changed in the last few weeks. Your hair is getting lighter and that awful first haircut of yours has finally grown back out. You are almost 12 big pounds now (although you haven’t gained any length so most of it is in your thighs). Your eyes are opening more and you are becoming more active and playful. Your cry sounds more like a baby than a newborn these days. And this weekend we hit two major milestones.
Thursday I decided you needed to learn how to smile and so I began to teach you. I would give you a big grin, point to my mouth and say “this is Mommy’s smile” and then I would pull your mouth up into a smile and say “this is Audrey’s smile!”. After a few times of this you would do a quick up down motion with your mouth and I would give you lots of praise. Then Friday morning after we got out of bed and dressed for the day I asked you to show me your pretty smile, and you did! I didn’t even have to do it for you the first time! This was so encouraging for me. The reason language comes hard for special kiddos like you is because they don’t understand symbols. That’s all a word is, a verbal symbol. So the fact that you understood so quickly what I wanted from you thrilled my heart. Most of Friday we kept practicing, and even if you couldn’t get a full smile, or hold it for very long, your mouth was busy and you were definitely trying. Then on Saturday we went to Honey and Grandpapa’s house for Grandpapa’s big birthday celebration! He held you and tickled your chubby chin and you just smiled and smiled for him. I couldn’t believe it! After I tried so hard to coax even a tiny one, you gave them all away freely to Grandpapa. But I was glad you two had that special time. I tried to capture your new smile in a photo, but someone was a little camera shy and this is the best I got.

Friday was also the first time you reached for a toy! Daddy and I gave you your first Christmas present last week since we knew it would help you learn and grow. It is a jungle mat with lots of toys and lights and music and different textures. Sometimes you like it, sometimes you don’t. Friday you were very interested and after lying real still and watching the lights for awhile, you then reached up and hit the little parrot! Not just once or twice but several times. I could barely believe my eyes. Grammy showed up just in time to watch you play. You were so cute! I have tried to get you to reach for the toy a couple times since, but this weekend you decided you would much rather be held than put on the floor to entertain yourself. Imagine that.
You saw almost every one of your aunts and uncles this weekend! Uncle Shane, Aunt Lori, Aunt Lesley, Aunt Paula, Aunt Shelby and Uncle Clayton. You have such a good time with them all. And you loved Grace and Frank. When they talk you concentrate and try so hard to see them. I think you know they are your cool older cousins and you love them. Aunt Paula is staying with us tonight and we had fun playing with your glasses.
Here is “Professor Aunt Paula”.
And “confused student Mama”.
And this is “annoyed cat Misty”.

Wednesday, November 5, 2008

November 5

Today Mama has been frustrated to the point of tears all afternoon. Audrey, the lady who handles Paysse’s payments, called me early this afternoon saying your surgery was going to be canceled because of financial reasons. Since the financial counselor is trying to get the hospital to accept you out of charity, the first step is to apply for Medicaid and be denied. Then the hospital decides whether or not to eat the cost for their portion of the surgery. We would have to pay the doctor her fee of $5000 out of pocket, which is a ridiculous amount of money for 45 minutes of work. Still we would still save thousands and you would hear no complaint from me. However, Paysse said (through Audrey of course--she wouldn't take the time to talk to me about this personally) she didn't want me to have to pay for it out of pocket if Medicaid fell through. I don’t understand her reasoning since when the Medicaid falls through I will without a doubt have to pay at least the surgeon’s fee. What is the alternative? Not have the surgery and let you go blind? So basically what she means is she doesn't want to risk not getting paid by me when we get denied Medicaid. I asked Audrey when she thought the financial decision would be made by TCH and she said by the end of the week. I was willing to postpone the surgery until next week in order to let all of this get straightened out (but not with the happiest of hearts).

The problem came up when I was told the next surgery spot available is December 4th. A whole month away! If we wait that long you will be 7 months old by the time we get you in contacts and actually seeing something. That is just not acceptable. I explained to Audrey how money isn’t the issue, that you have at least three grandmothers who would send Paysse her fee in a heartbeat. Timing is the issue and as it is I am annoyed that it took us 6 weeks to be scheduled for a surgery that should have taken place 3 months ago. I then offered numerous times to pay her today for tomorrow's surgery and she (through Audrey) refused every time. Apparently there are laws against surgeons accepting money from those who may be eligible for Medicaid, so with that ball rolling I couldn’t just pay her up front. I absolutely understand her not wanting to get in trouble with the government. What I can’t understand is why she wouldn’t just go ahead and do the surgery, knowing that I was so willing to pay her up front and that I would pay her as soon as allowed. Audrey worked hard for us and approached Paysse with our case at least three times I know, but eventually came back and said we can’t make her change her mind. I would think a doctor would be compassionate enough to give an infant every chance at vision she could, especially an infant with numerous other obstacles like you. I just can’t believe she would make you suffer for selfish, not to mention illogical reasons.

So I called our financial counselor, explained why they wanted to cancel our surgery and asked if it was legal for them to refuse you the surgery. She told me the surgeon is within her rights but that we had not officially applied for Medicaid yet and if I wanted to drop the application process I could pay for the surgery myself. I asked her to call Audrey for me so she knew she could accept my payment and was put on hold. When she came back on the line she very apologetically said they had already given my spot away and nothing more could be done. After I spoke with Daddy (who like me had been on the phone for the last two and a half hours trying to straighten this out), I wanted to call Renee and insist she get our spot back. But by then it was 4:30 and business hours were over.

To top it all off, we have been ready to reverse your ostomy for the past 6 weeks but were giving your eyes precedence (under the assumption they would have been taken care of long before now). Just this morning I spoke with Dr. Kim and scheduled the pull-through for December 5th. Now, with a December 4th ptosis surgery, the colostomy has to be rescheduled for Dec 23 (we would be in the hospital over Christmas) or January. By the time it is said and done we will have waited a total of 3 1/2 months to reverse the colostomy because of this ridiculous ptosis surgeon.

I am looking for a different surgeon tomorrow who will maybe put some urgency on our case, get us in more quickly, and treat you more like the sweet baby you are than a business transaction. If I can’t find someone to do the surgery more quickly we will stay with Paysse despite my bad attitude with her bad attitude. Your eyesight is too precious to put this procedure off any longer.

Tuesday, November 4, 2008

November 4

Goodness! I don’t write to you for a while and look what happens. So much is going on this week, I don’t know where to begin. But while you and Daddy sit in the living room waiting to see who will be our next president, I will catch you up a bit.

For the last few weeks I have been looking forward to your ptosis surgery which was scheduled for this Thursday. And in those weeks we have been fighting with insurance that refuses to pay for it. They don’t doubt the medical necessity of the procedure, but they tell us it isn’t included in our benefits plan. Since so often it is used for cosmetic reasons, they just don’t cover this surgery. Period. Necessary or not. For now insurance is a dead end.

So today I received a call from the surgery scheduler (whose name is also Audrey!) telling me they were going to cancel your Thursday operating room time. I asked her if I could just pay for the surgery out of pocket, and Audrey said she would advise against it since this condition isn’t detrimental to your health. I explained to her why I thought it was…at almost 5 months old you aren’t smiling, holding your head up, or rolling. All of this can be at least partially, if not completely, attributed to your lack of vision and I am not willing to put the surgery off any longer. She made some phone calls and asked me to meet with a TCH financial counselor after your dermatology appointment this morning.

So we met and while she finds it hard to believe insurance can justify not paying for the surgery, she had me fill out an application to have it done pro bono. I left her office with the peace of knowing that the surgery was still on for Thursday with or without insurance. That alone was a big answer to prayer—Daddy and I don’t care about the price tag on this surgery. We only care about the timing of it. But insurance hasn’t been our only obstacle this week…

Monday I started trying to decide the best way for you to get an IV for the surgery. The anesthesiologist was unable to get one in your tiny little veins last surgery so he recommended you come in the evening before to get a PIC line this time. This isn’t ideal for you because PIC lines have to stay a minimum of ten days, and it just seems silly to do that for an hour long surgery. The alternative is to go in Thursday morning and…well, I forget what this one is called…but basically they do an ultrasound to find the right vein to stick. This requires extra OR time which you don’t have (I have found it is all about OR scheduling). So while the doctors were going back and forth about what would be best, I asked the nurse if it would be safe to reverse the colostomy within the ten days following the ptosis surgery. I know for sure you will need a PIC line for that one since you will be on TPN for a few days and you blow IV’s so quickly. We could make the PIC do double duty. The ophthalmology nurse didn’t see why not since the areas to be worked on are on opposite ends and the ptosis doesn’t require a major cut. I called pedi-surg to see if the reversal could be worked into Dr. Kim’s schedule, but was told I wouldn’t get an answer until Wednesday morning. When I updated the other surgery scheduler Renee, suggested we do both surgeries at the same time. When I told her it was Dr. Paysse, the ptosis surgeon, who didn’t want to combine, Renee seemed surprised. So we left with plans for me to talk to Dr. Kim, Renee to talk to Dr. Paysse, and tomorrow decide if the two procedures should be done together or not.

I am all for combining the surgeries for a number of reasons. The anesthesia always worries me and the less you go under the better. Insurance would pay for the anesthesia, OR, hospital stay--all of the operation except for the ptosis portion. If separate you would be on stronger pain meds for the colostomy reversal than for the ptosis surgery, so combined your recovery would be less painful for the ptosis. The only drawback is that the chance of combining both surgeries for Thursday is next to none. That means the ptosis would be postponed until surgeons and OR could be coordinated. I want what is safest for you whether that means to do the surgeries separate to lessen the chance of infection, or do them together to lessen the risk of anesthesia. I pray that God will give us the wisdom to make the right decision.

Well, Daddy just came out to the office to tell me the race for presidency has been decided and Barack Obama won. History has been made, fireworks are going off in the neighborhood, and you are crying. Tonight I take comfort in knowing that in matters of both our country and our family, God is in control.