Desmond is taking big strides in becoming a big kid. Not only does he sit at the table to eat at daycare and join in activities like singing and arts and crafts, but now he is truly mobile! Last Sunday we stopped by Sophie and Alex's house to drop off some food for their freezer in preparation of the arrival of their baby. Alex's mother, Lupe, was there and asked if Desmond was walking yet. I told her not yet, but soon. Not even one minute later Alex stood Desmond up and he walked a good three or four feet to Sophie. I had no idea it would be that soon! We all screamed and clapped and made him do it over and over again. He liked the attention for sure.
In other not so good news, I got a letter today from MS Medicaid. We had our reevaluation last month to see if he was still eligible and unfortunately he is not. I guess the child support I started receiving last February pushed us over the limit. He is, however, eligible for MS CHIP insurance. I called the New Orleans Children's Hospital to make sure we were still covered and Mary Ellen said she would run it by the business office and see. I also talked to someone at CHIP and she said if they aren't they just have to call and obtain prior authorization before the surgery. It doesn't sound like it should be that complicated, but it still scares me.
When I woke up this morning there was a reminder on my phone that we were supposed to be checking into UMC in ten minutes. I guess I forgot to delete the original surgery date from the calendar on my phone. It's been on the back of my mind all day nagging me. Then I go home to find this letter in the mail. I'm trying not to worry too much, but i don't know what we'll do if CHIP won't cover the surgery. I just have to tell myself that something will come through.
Wednesday, August 10, 2011
Thursday, August 4, 2011
Surgery Date!!!
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| I snagged this shot of Desi while I was taking L & O's pregnant portraits. |
I'm so excited to have things moving again. Last week we got our care package from Cranio Care Bares, a non-profit organization that sends out care packages for Cranio families for their time in the hospital. It was really wonderful and full of all kinds of goodies that I would not have thought to bring myself. It was still kind of a sad reminder though that his pre-op appointment should have been this week and his surgery next week. But, I'm trying to move past my disappointment in UMC and just be grateful for the craniofacial team at CHNOLA.
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| Did I mention they're not going to shave off his beautiful curls? |
Monday, July 25, 2011
New Beginnings
I haven't updated about Desi's surgery in a while. When we last checked in on the blog Desmond was scheduled to go under the knife on August 10.
It was finally getting so close and then I got a phone call from one of the nurses at UMC telling me that they were sorry to tell me that Dr. Angel, the pediatric plastic surgeon, is no longer with them and therefore they can't do it anymore.
Needless to say I was completely devastated. Dr. Angel was the only plastic surgeon in the state that could do the surgery and so far MS Medicaid has been paying for everything. So going to Dallas like they recommended was pretty much out of the question.
Thankfully, Desi's pediatrician, the wonderful Dr. Sluis, recommended I look into the New Orleans Children's Hospital. I didn't know, but they have a cleft lip and palate and craniofacial clinic. They are also MS Medicaid providers! I gave them a call last Monday. They were in clinic that day, which they only have once a month for Desi's age group. So the nurse took a message and said the coordinator would call me back the next day.
The coordinator, a really nice woman named Mary Ellen called on Tuesday. I explained everything we had been through and that we we're basically hospital homeless. She squeezed us in the little baby clinic on the following Monday. If she hadn't been able to do that we would have had to wait until September for the next clinic with a MS Medicaid provider doctor.
So last Sunday we headed down to New Orleans for the weekend. We stopped in Magee first to see the Browns and go to church with them. We had a nice visit and Desi got to meet more of his extended family. We stayed for lunch and Desi ate his weight in some delicious greens that Rhonda cooked.
Afterward, we headed on down to Metairie and stayed with my aunts Nancy and Jess and their grandkids Loraine and Gio. Desi really enjoyed playing with his cousins and took a liking to Nancy.
Monday we went into the city and hung out with my friend, Sammie, her giant son Spencer and her nephew Mani. We ate some awesome shrimp po-boys and then Desi and I headed back to Nancy's house so he could get a good nap before his appointment at the children's hospital. It was pouring down rain like nothing I have ever seen in Vicksburg. I had forgotten it could rain like that.
So I continue to Nancy's house despite her warning that her street floods during a hard rain. Desi was already asleep and how bad could it really be, right? I get to her house and put him in the bed. Ten minutes later I look out the window to see water covering the street in front of the house. I knew if I didn't leave then we would be stuck in the house and miss the appointment we had driven all this way for. I loaded Desi back I to the car in the pouring rain. He was such a trooper and stayed asleep through all of this. As we left the neighborhood I drove through the highest water I have ever had to before. I drove past garbage cans floating down the street and almost stalled out more than once. We got out of the neighborhood and ended up in crazy traffic on Jefferson Highway. It was a good thing we left when we did be wise we ended up getting there right on time.
At the appointment, which we didn't have to wait forever for, we got to meet the very kind Mary Ellen, the neurosurgeon, Dr. McBride, and the plastic surgeon, Dr. Hilaire. They all came and sat in the exam room with us and answered ALL of my questions. I was afraid that since it was an appointment late in the day that we would be rushed through it all but it was not so. They took their time and let me take mine.
The best news of all is that they are going to do the surgery and it's a different procedure than they had been planning on doing at UMC. In Jackson, they were going to basically remove parts of Desi's skull that have been misshapen by the growth of his brain in the wrong directions and reshape them. They would then put them back together in his head using plates and screws. The surgery would have lasted about 6.5 hours and he would have spent at least one day in the ICU and a total of about a week in the hospital.
The surgery they proposed doing at New Orleans Children's Hospital is a lot less intense. It would not involve any hardware. Dr. McBride and Dr. Hilaire said they would simply go in and remove the suture that has prematurely closed and then some strips along the sides of his head as well. They said that would be about it and that from there nature will do the rest. Desmond's brain will have room to grow the way it is supposed to and his skull will reshape with that growth. This surgery will only take about 1.5 hours, he may not even have to go to the ICU and he will only be in the hospital for three or four days. They said they have had a 100 percent success rate with this surgery and that none of their patients have had to have second surgeries. Can you say impressed!!!!
I can't tell you how relieved I am after all of the mess we've been through I feel like this is where we should have been from the very beginning. They are very busy, but they said they would fit his surgery in in the next few weeks. The only bad part of the visit to the hospital was that Desi had to have blood drawn to determine his blood type. Since he was born at home, we never had the blood work done that they normally do from the cord blood. It took them five times of inserting the needle to finally get a vein. The poor boy was beside himself and I felt so bad for holding him down. But, it was all for good, because now we know that he is A+ and so am I. I know that the blood at the blood bank is just as good as my own, but I feel better knowing that he is getting my blood if he needs a blood transfusion.
Overall, it was a fantastic weekend. We finished out our trip to the Big Easy with some beignets and a Café Au Lait at Cafe Du Monde. Well, Desi didn't have any, but he enjoyed the atmosphere!
Then we strolled through the market and bought a souvenir to commemorate the trip. Don't think I'm crazy for buying a voodoo skull for Desi, he picked it out himself. I thought it was rather appropriate too since we were there because of his skull.
When we finally got home we stopped in to see Grady and had a wonderful visit with Lauchlin and Olivia. I really feel so lucky to have such wonderful friends in mine and Desi's life over the last year. I hope I can be as much help and support to them as they have been to us.
Can you tell I'm sappy and happy?
It was finally getting so close and then I got a phone call from one of the nurses at UMC telling me that they were sorry to tell me that Dr. Angel, the pediatric plastic surgeon, is no longer with them and therefore they can't do it anymore.
Needless to say I was completely devastated. Dr. Angel was the only plastic surgeon in the state that could do the surgery and so far MS Medicaid has been paying for everything. So going to Dallas like they recommended was pretty much out of the question.
Thankfully, Desi's pediatrician, the wonderful Dr. Sluis, recommended I look into the New Orleans Children's Hospital. I didn't know, but they have a cleft lip and palate and craniofacial clinic. They are also MS Medicaid providers! I gave them a call last Monday. They were in clinic that day, which they only have once a month for Desi's age group. So the nurse took a message and said the coordinator would call me back the next day.
The coordinator, a really nice woman named Mary Ellen called on Tuesday. I explained everything we had been through and that we we're basically hospital homeless. She squeezed us in the little baby clinic on the following Monday. If she hadn't been able to do that we would have had to wait until September for the next clinic with a MS Medicaid provider doctor.
So last Sunday we headed down to New Orleans for the weekend. We stopped in Magee first to see the Browns and go to church with them. We had a nice visit and Desi got to meet more of his extended family. We stayed for lunch and Desi ate his weight in some delicious greens that Rhonda cooked.
Afterward, we headed on down to Metairie and stayed with my aunts Nancy and Jess and their grandkids Loraine and Gio. Desi really enjoyed playing with his cousins and took a liking to Nancy.
Monday we went into the city and hung out with my friend, Sammie, her giant son Spencer and her nephew Mani. We ate some awesome shrimp po-boys and then Desi and I headed back to Nancy's house so he could get a good nap before his appointment at the children's hospital. It was pouring down rain like nothing I have ever seen in Vicksburg. I had forgotten it could rain like that.
So I continue to Nancy's house despite her warning that her street floods during a hard rain. Desi was already asleep and how bad could it really be, right? I get to her house and put him in the bed. Ten minutes later I look out the window to see water covering the street in front of the house. I knew if I didn't leave then we would be stuck in the house and miss the appointment we had driven all this way for. I loaded Desi back I to the car in the pouring rain. He was such a trooper and stayed asleep through all of this. As we left the neighborhood I drove through the highest water I have ever had to before. I drove past garbage cans floating down the street and almost stalled out more than once. We got out of the neighborhood and ended up in crazy traffic on Jefferson Highway. It was a good thing we left when we did be wise we ended up getting there right on time.
At the appointment, which we didn't have to wait forever for, we got to meet the very kind Mary Ellen, the neurosurgeon, Dr. McBride, and the plastic surgeon, Dr. Hilaire. They all came and sat in the exam room with us and answered ALL of my questions. I was afraid that since it was an appointment late in the day that we would be rushed through it all but it was not so. They took their time and let me take mine.
The best news of all is that they are going to do the surgery and it's a different procedure than they had been planning on doing at UMC. In Jackson, they were going to basically remove parts of Desi's skull that have been misshapen by the growth of his brain in the wrong directions and reshape them. They would then put them back together in his head using plates and screws. The surgery would have lasted about 6.5 hours and he would have spent at least one day in the ICU and a total of about a week in the hospital.
The surgery they proposed doing at New Orleans Children's Hospital is a lot less intense. It would not involve any hardware. Dr. McBride and Dr. Hilaire said they would simply go in and remove the suture that has prematurely closed and then some strips along the sides of his head as well. They said that would be about it and that from there nature will do the rest. Desmond's brain will have room to grow the way it is supposed to and his skull will reshape with that growth. This surgery will only take about 1.5 hours, he may not even have to go to the ICU and he will only be in the hospital for three or four days. They said they have had a 100 percent success rate with this surgery and that none of their patients have had to have second surgeries. Can you say impressed!!!!
I can't tell you how relieved I am after all of the mess we've been through I feel like this is where we should have been from the very beginning. They are very busy, but they said they would fit his surgery in in the next few weeks. The only bad part of the visit to the hospital was that Desi had to have blood drawn to determine his blood type. Since he was born at home, we never had the blood work done that they normally do from the cord blood. It took them five times of inserting the needle to finally get a vein. The poor boy was beside himself and I felt so bad for holding him down. But, it was all for good, because now we know that he is A+ and so am I. I know that the blood at the blood bank is just as good as my own, but I feel better knowing that he is getting my blood if he needs a blood transfusion.
Overall, it was a fantastic weekend. We finished out our trip to the Big Easy with some beignets and a Café Au Lait at Cafe Du Monde. Well, Desi didn't have any, but he enjoyed the atmosphere!
Then we strolled through the market and bought a souvenir to commemorate the trip. Don't think I'm crazy for buying a voodoo skull for Desi, he picked it out himself. I thought it was rather appropriate too since we were there because of his skull.
When we finally got home we stopped in to see Grady and had a wonderful visit with Lauchlin and Olivia. I really feel so lucky to have such wonderful friends in mine and Desi's life over the last year. I hope I can be as much help and support to them as they have been to us.
Can you tell I'm sappy and happy?
Location:New Orleans, La.
Saturday, July 9, 2011
Swim Lessons
So, I have fallen terribly behind in my blog duties and I apologize. Summer time is busy time. So much is going on right now I guess it's kind of overwhelming to try to blog about it all. Yesterday was Desi's first birthday, but I will write all about it after his party tomorrow.
The most exciting this so far this summer was swim lessons! We signed up for the Mommy and Me lessons at the Vicksburg City Pool. Pay only $12 and you get two weeks of lessons. We only made it to one full week and one day out of the second week, but it was still well worth it. I borrowed a waterproof camera from my friend/neighbor/coworker, David, and shot these on Funday Friday. We didn't have a real lesson, but Desi still practiced almost everything we had learned earlier in the week.
The main point of the lessons for Desmond at this age is to just get him used to the water so he won't be scared of it and learning safety. Well, I knew he wouldn't really have any trouble liking the water since he has a blast every night in the bath. I was right. He took to it like fish in the water.
The most exciting this so far this summer was swim lessons! We signed up for the Mommy and Me lessons at the Vicksburg City Pool. Pay only $12 and you get two weeks of lessons. We only made it to one full week and one day out of the second week, but it was still well worth it. I borrowed a waterproof camera from my friend/neighbor/coworker, David, and shot these on Funday Friday. We didn't have a real lesson, but Desi still practiced almost everything we had learned earlier in the week.
The main point of the lessons for Desmond at this age is to just get him used to the water so he won't be scared of it and learning safety. Well, I knew he wouldn't really have any trouble liking the water since he has a blast every night in the bath. I was right. He took to it like fish in the water.
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| He blew bubbles with his mouth and drank and choked on lots of water. But in the end all was well. |
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| We had lots of fun in the sun. Mommy got a little more red and Desi got a lot more brown! |
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| Desi got used to balancing in the water by chasing soccer balls and floaty toys. |
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| We ran under the mushroom fountain and Desi was intrigued. |
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| My favorite photo of all. Desmond kind of goes into this Zen mode in the water and holds his head up and his arms back almost like a yoga position. I feel like he thinks if I let go he will fly away. |
Friday, June 24, 2011
Oh Boy
Well, Desmond is just growing and growing and growing. I wouldn't be surprised if he took his first steps before his birthday. He pulls up on everything and is cruising about like a pro.
He is also using that voice of his, for good and for bad. He jabbers away almost constantly. Everything starts with a "d" and more than just Carmela are called "dog" or "doggie." I've been trying to work with him on saying "more" when he wants more food instead of screeching or grunting at me, but so far no success...it doesn't start with a "d."
He has started to throw "baby" tantrums. I call them "baby" because I've read that babies his age don't throw actual tantrums, they just show their frustration in what might seem like a tantrum. (Sounds like a tantrum to me!) He's become obsessed with hair. Whether it's his own that he's pulling out, mine or Carmela's that he picks up off the floor, he doesn't want to let it go.
I will have just vacuumed and I'll look down and he's found the one little ball of Carmela hair in the entire apartment and will be holding on to it for dear life. When I take it away and tell him "yuck" he screams and cries and throws a "baby"...oh hell I'll call it what it is...a tantrum. I don't know what it is about hair, but he loves it. He pulls his own hair as a self comforting thing when he's tired. He will also sometimes grab a fist full when he is mad about something. And then there's mine. He grabs and pulls at it so much I can't wear it down even in the rare few moments of the day that it's not too hot to.
Last week we had a brief but wonderful visit from Ann Lowney all the way from Ireland. It was so nice to see her again. Ann visited us last year at this exact time. I guess I should say she visited me because I hadn't had Desmond yet. He was born three weeks later. She was very glad to meet the little guy finally. The next time she breezes through Mississippi he will be running around and talking!
Look at all those teeth! And of course that crazy hair!
He is also using that voice of his, for good and for bad. He jabbers away almost constantly. Everything starts with a "d" and more than just Carmela are called "dog" or "doggie." I've been trying to work with him on saying "more" when he wants more food instead of screeching or grunting at me, but so far no success...it doesn't start with a "d."
He has started to throw "baby" tantrums. I call them "baby" because I've read that babies his age don't throw actual tantrums, they just show their frustration in what might seem like a tantrum. (Sounds like a tantrum to me!) He's become obsessed with hair. Whether it's his own that he's pulling out, mine or Carmela's that he picks up off the floor, he doesn't want to let it go.
Speaking of hair, get a look at those curls!
I will have just vacuumed and I'll look down and he's found the one little ball of Carmela hair in the entire apartment and will be holding on to it for dear life. When I take it away and tell him "yuck" he screams and cries and throws a "baby"...oh hell I'll call it what it is...a tantrum. I don't know what it is about hair, but he loves it. He pulls his own hair as a self comforting thing when he's tired. He will also sometimes grab a fist full when he is mad about something. And then there's mine. He grabs and pulls at it so much I can't wear it down even in the rare few moments of the day that it's not too hot to.
Last week we had a brief but wonderful visit from Ann Lowney all the way from Ireland. It was so nice to see her again. Ann visited us last year at this exact time. I guess I should say she visited me because I hadn't had Desmond yet. He was born three weeks later. She was very glad to meet the little guy finally. The next time she breezes through Mississippi he will be running around and talking!
They got along from the very start.
Wednesday, June 15, 2011
Surgery date
Last week we finally got the call we have been waiting for. Desmond's surgery is scheduled for August 10! His pre-op appointment is Aug. 5 and I will hopefully have all of my questions answered then. If he pulls this whole, "I don't have time for your questions" bull, Desi and I will just have to find ourselves a new surgeon and file a MAJOR complaint with the hospital.
He also had a checkup with Dr. Carron, the ENT, yesterday and he said everything looked perfect. Desi has to go back every six months until the tubes fall out. Dr. Carron also said Desi was the most pleasant child he had dealt with all day...and it was 3 p.m. Poor Dr. Carron!
In other news, Desi has two words in his vocabulary! He now says "dog" and "uh-oh." I haven't captured "dog" on video yet, but here is "uh-oh."
And as per request from Desi's Teetee, here is a really stinking cute video of him giggling.
He also had a checkup with Dr. Carron, the ENT, yesterday and he said everything looked perfect. Desi has to go back every six months until the tubes fall out. Dr. Carron also said Desi was the most pleasant child he had dealt with all day...and it was 3 p.m. Poor Dr. Carron!
In other news, Desi has two words in his vocabulary! He now says "dog" and "uh-oh." I haven't captured "dog" on video yet, but here is "uh-oh."
And as per request from Desi's Teetee, here is a really stinking cute video of him giggling.
Saturday, June 4, 2011
Farmers Market Socializing
Desi and I went to the Vicksburg Farmers Market this morning to pick up sone veggies, fruit, bread and a sunburn (me not him). We ran in to David who took over the stroller pushing for a while.
After a while Desi warmed up to him and even shared some sugar!
It was good to see practically the whole V'burg crew there. Team Mitchell of course were there volunteering. The Kennedys were out for some shopping in the heat too. Team Lindsay arrived as we were about to leave. Our travel worn friend, Sandy, our heat hating pal, Amy, and the farmers market pros Kristen and Amber were all there too.
On the Desi side of all this we ran in to his pediatrician who asked about how things were moving with the surgery. I told him about the disappointing appointment with the neurosurgeon last week and about the nurse who told me she would call this week with the surgery date but didn't because she's on vacation. He said if I call his nurse Monday and leave the name and number of the neuro nurse, he would call and see what he could do. Can I just say that we looooooove Dr. Sluis?!?!?!
After a while Desi warmed up to him and even shared some sugar!
It was good to see practically the whole V'burg crew there. Team Mitchell of course were there volunteering. The Kennedys were out for some shopping in the heat too. Team Lindsay arrived as we were about to leave. Our travel worn friend, Sandy, our heat hating pal, Amy, and the farmers market pros Kristen and Amber were all there too.
On the Desi side of all this we ran in to his pediatrician who asked about how things were moving with the surgery. I told him about the disappointing appointment with the neurosurgeon last week and about the nurse who told me she would call this week with the surgery date but didn't because she's on vacation. He said if I call his nurse Monday and leave the name and number of the neuro nurse, he would call and see what he could do. Can I just say that we looooooove Dr. Sluis?!?!?!
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