Friday, May 27, 2011

Disappointing appointment

Today was a big day, or at least I thought it was going to be. I thought today was going to be the day that Desmond's surgery would be scheduled and all of my many questions would be answered.

We took the drive over to Jackson this morning for Desi's appointment with the neurosurgeon, Dr. Parent. Our last appointment with him was in March. He sent us to all these other doctors and said once they reported back to him he would be able to answer all of my questions at our next appointment.

So, again I arrived with typed list of questions in hand and recording app at the ready so I could make sure not to miss a single detail. And after all the waiting and anticipation and hope that this was the beginning of the end of this process, he barely spoke with us for five minutes. He told me the same thing as last time. At the next appointment, the pre-op, "at that time I'll be able to sit down and spend time with you," he said. Added to this frustration is the fact that the surgery hasn't even been scheduled yet and they say it may be August before they can fit him in.

We managed to squeeze a few answers out of him and the nurses were happy to answer as many of the as they could.

1. Q: How many of these surgeries does he perform per year?
A: Easily over 50 last year just for the sagittal craniosynostosis.

2. Q: Is it better to do the surgery before a year old? Do the outcomes vary depending on the age of the child?
A: Before six months would have been easiest. After that you've passed the time so it doesn't make any difference whether they're seven months or ten months. The success rate is all within the same range.

3. Q: Will we be able to donate blood specifically for Desmond?
A: They will ask you to give blood in the name of the child so it is going directly to him.

4. Q: What does recovery look like?
A: He will be in the ICU for the first day after which he will be in a regular room for five days to a week. He will then get to go home if everything is going well. He will return in about every two to three weeks for a checkups and gradually fewer checkups.

5. Q: how long should I plan to be off of work?
A: Three to four weeks at least.

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Wednesday, May 25, 2011

Coast vacation

Desi an I took a much needed trip home to the Coast last weekend. Boy did it make me homesick! There's nothing like having a child of your own to make you want to move home.

We got in town late Friday after stopping in The H'burg to visit Auntie Crystal. But Desmond was in good spirits after sleeping all of the four hours in the car. He stayed up until almost midnight!

We took it easy in the morning and had a wonderful visit with the Smerz/Hrabak family in the afternoon. Collin entertained us with his sick guitar and dance moves!

YouTube Video

Saturday evening Desmond and I met up with Amber and had some good burgers at SOS on Government Street. It was great to see two of my gals in one day.

Sunday morning we went to Lowe's with Nana to purchase the parts for a flower garden for her front yard. Wait, scratch that. I was under the impression we were going to search for and purchase one bush or shrub. After 93 landscaping bricks, three trips to Lowe's, several pretty plants and a day of back breaking work we have a butterfly garden in the front yard around an old pine tree stump.

Desmond played in his very own swimming pool while Nana and I did all the tough stuff. He had so much fun!

Monday morning we had breakfast while Desi entertained his visitors, Susan and Walter. Of course, he was a hit.

We had some last minute snuggles with Nana before hitting the road.

Next stop was Hattiesburg for a visit with Luci, Cencho, Jennifer and Leslie. It was really good to see them. It had been a really long time since we had seen them. The girls have gotten so big.

They had a good visit with Desi. What would they be to one another if the girls are my god daughters?

We hated to say goodbye, but alas, we had one more stop to make before home. Forty-five minutes later we were in Magee for a quick visit with Desmond's Granny and Teetee. He crawled around in the grass and got lots of love from Juliana.

Overall it was a fantastic weekend. I wish we could have stayed down on the coast forever! Maybe one day we'll find our way back home.

Friday Desi finally has his appointment with the neurosurgeon!! An update of what is said will be coming soon after.

Thursday, May 19, 2011

Desi's tubes

Today we arrived at UMMC at the awful hour of 6 a.m. to check in for Desmond to have tubes put in his ears. All of the doctors and nurses were really nice and everything went great.

Desmond got to wear a tiny hospital gown.

He was so brave and didn't cry at all even though he hadn't eaten anything all morning.

He let them listen to his heart and didn't squirm at all.

He was all the rage in the pre-op area of course. Dr. Carron said everything went perfectly. He still has an infection in one ear, of course. He'll have to have some drops for a few days, but he'll be in the clear soon.

Two hours later we are back at Heather's house waiting for his prescription to be ready at Kroger and for his grandparents to come for a visit.

Overall this was not a bad experience. I kind of look at it as a test run for what's to come this summer, no matter how small by comparison.

Saturday, May 14, 2011

Desmond had a few more doctor appointments this week. We went back to the ENT since he was battling his fourth ear infection in three months. I was worried that the infection was going to interfere with the timing of his surgery. I thought I was going to have to convince him to put tubes in his ears but he was right there with me. They scheduled it for this coming Thursday. Dr. Carron said the tubes will clear everything up and he should be good to go for the big surgery.

Next we saw the ophthalmologist. I have no clue how they check his eyes besides flashing some prisms in front of them after putting five different kinds of drops in them. Regardless, he has perfect eyes. We will have to go back for a checkup eight weeks after the surgery to make sure that changing the shape of his head hasn't changed his vision.

This week we also came down with thrush:( I'm battling it with every resource I can muster. For a few days Desmond got doses of gentian violet that stained his mouth dark purple. He looked like a little goth baby.

Other than the doctor appointments Desi has been a busy boy. He is crawling everywhere!! And pulling up on everything he can find. He is jabbering more and more every day and I think he really is about to start talking soon. The question is, will it be in English or Spanish?

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Sunday, May 8, 2011

My first official Mother's Day

As it turns out, I became a mother exactly ten months ago. Since it's just Desi and I, I was expecting a quiet weekend of work and baby time.

So I was surprised when my first Mother's Day came a little early on Saturday. I had to work so Heather came over to Vicksburg to watch Desmond for me. When I finally got home and walked in the apartment I could smell yummy smells from the kitchen. Heather had cooked up a big ole pot of deliciousness for dinner with plenty left over to freeze and feed us through summer.

Desmond was still asleep so we were sitting around chatting. I looked over and saw a card addressed to Mom. I automatically assumed it was for our mom. I asked, "Oh, you got Mom a card!?" "No, Desmond got that for you," she said. I opened the card and it was signed by Desi with an outline of his hand.

There was also a sterling silver necklace with a heart pendant in the card. I honestly teared up!

"A mother holds her child's heart forever."

After we ate I went to wake up Desi and found him wearing a new outfit including a shirt declaring "My Mom Loves Me."
It was a really nice day and great to have such a wonderful sister that understands how much the small stuff can mean.

This morning I went to work for a little while and Mani watched Desi at her house. When I went to pick him up she had an omelet ready for me! Then we went back in the evening for a scrumptious chicken and eggplant Parmesan dinner complete with chocolate moose and strawberries. Mani rocked the Mother's Day even when her too kids, Grant and Maya, were brought to tears in a hallway collision.

I must say, it was a wonderful first Mother's Day!

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