We're Home

We finally made it home today and are incredibly grateful! We'll celebrate her birthday a little today but will probably make tomorrow the day because we're all so exhausted. Nothing like sleeping in your own bed with noone coming through the door about the time you finally drift off!! We'd probably still be at the hospital if we hadn't asked about our discharge status. The doctor came by this morning and said we could head home after lunch. We patiently waited and waited and waited.... When I went out to the desk, our nurse acted like she knew nothing about it and no paperwork had been filled out. I'm quite sure that there are many of you reading this who are nodding your heads right now because you've been there!! You really have to stay on them to keep communication going!! Anyway, the important thing is we're home, she seems to be doing well, and we are so so grateful. We love you all and continue to thank you for your unending support and kindness.

Thank You God

Hi all! I am so happy to report that we finally have an answer about Jodi's high fevers. She has a bad UTI and they started antibiotics tonight! We are beyond relieved because it has been frightening and sad to see her in such misery with those high temperatures. She has gotten very little rest to this point so we are praying that the medicine takes effect quickly so she, Mama, and Baba can get some sleep! We have felt your prayers and love which has sustained us through the long days and nights. We hope to bring Jodi home this weekend especially by Saturday since it will be her birthday. Please pray with us that the medication works as expected and that we can as Jodi keeps saying "go home." We love you all very much.

Running some fever

Nye Nye (Grandmother Dianne) here,

Susan asked that I write this morning just to update you on Jodi's current situation. She is continuing to run a fever today and is nauseated -- pretty miserable little girl and pretty miserable parents. The doctors are doing blood work to rule out an infection and are considering the possibility of a urinary tract infection caused by the catheter -- time will tell. They will have to watch her for 48 hours so it looks like they will be spending the weekend at the hospital. They ask for your special prayers today as they all struggle with this situation. We all thank you for your wonderful support, love and prayers.

Starting to Move

Jodi was able to get out of bed today but it wasn't because it was her idea! I told our nurse that helped me get her up that I was pretty sure we were being cussed out in Chinese!! Sometimes it's best not to have an interpreter. She eventually settled down sitting in the chair. She now has the catheter out which is more comfortable but also means she has to get up and down alot to go into the bathroom. She moans and groans with her walking and is unsteady but she does it. They now have Jodi on a clear liquid diet which she is tolerating well. The doctor told us that if all continues to go well she may go home by tomorrow. We are so proud of her progress and blessed to have the great care we've received. We will be VERY glad when we can get home and in our own beds with nothing that beeps in sight. We want to thank you for the calls, for the visits, for those who have been walking Lucy without our even having to ask, for the gifts, and for your prayers. You guys are unbelievable and we thank God for you.

Hanging in There

Hi all! We are officially in a room as of last night which has been great. We are at Brenner's Hospital in Winston-Salem in room B824. Unfortunately Jodi had a tough night and is struggling with pain and a fever today. She's very sore and painful when we try to move her around. The doctor continues to be pleased with her progress and we feel she is getting good care. Jodi still smiles at us from time to time and is talking and teasing some. She seems content watching Dora and some of her other shows to keep her occupied. We'll work on getting her to move around more tomorrow which will be tough but necessary. She still shows that tough character and here's a good example. Last night she kept saying "potty." I would tell her just to go in the bed because she has a catheter in place. She would then say, "Mama, no trouble." This morning I found out the her catheter was leaking and that she was laying on soaked sheets. Bless her little heart! She was trying to be compliant and just listen to Mama. You can bet we're checking on everything she says now!! Our love and gratitude to you all.

She's a Tough One

Hi again! It's Saturday afternoon and Jodi's making good progress. She now has the breathing tube, nose tubes out, and restraints gone which is great and so much more comfortable for her. I wasn't in the room when they extubated her but evidently she let them know what good lungs she has! She's such a little trooper even though you can tell she doesn't feel well. She greeted me with a smile this morning even with all of those tubes still in place. They are hoping to move Jodi to a regular room by the end of the day which will be great for all of us. Hard to rest with all that beeping going on in ICU! She's now laying in the bed watching her favorite movie "101 Dalmatians" with Baba. The doctor came by earlier and was very pleased with her progress. Sounds like we're on the right track. We are grateful for your continued prayers, love, and support. God bless!

Surgery Update

Hi and thank you to all of our loved ones. It has been a long, exhausting day but made much easier thanks to our friends who came and sat with us for those many hours. Jodi was in surgery for about 10 hours. She is now in ICU and resting. They have her on the vent probably until tomorrow and are keeping medication in her to help with pain. She is not alert to open her eyes at this point but is definitely responding to our voices. It is difficult to see her like this but we are certain that her surgeon and other medical professionals took excellent care of her. He explained the complexity of what he had to do which well explained why the procedure was so lengthy. We thank you for your prayers and now ask for continued prayer that her body heal without infection or complication. Her physician sounded optimistic about her recovery and we are confident that she is in the hands of the greatest healer of all. We love and appreciate you and will keep you updated! God bless.

Beautiful weekend

We had a wonderful weekend in Georgia celebrating Fred's mother's college graduation! What a great time!! Jodi loved meeting all of her cousins, aunts, and uncle. She played until she was completely exhausted. She had so much fun on the gocart with her cousin Jason and would have stayed on indefinitely if there weren't other cousins who wanted a turn! She also loved getting Baba back with the Silly String. Jodi's enjoyed every bit of her time with her cousins and her aunts who were so kind to her.

As you know, Jodi's surgery is Friday which makes me nervous to even acknowledge. I found out that we will have internet access at the hospital so I'll be sure to update the blog to let you know how she's doing. Love to you all!

Fun on Mother's Day

I had a wonderful first Mother's Day, a day that I wasn't sure I would ever get to celebrate. Jodi and Baba definitely spoiled me! It was such a beautiful day and we decided to try our hand at putt putt.

In her usual fashion, Jodi was so excited to try something new. She would scream, "Yea!" whenever the ball went in the hole. She continues to be a ray of sunshine and I keep telling people I have alot to learn from her! She goes to bed happy and wakes up happy.

The other picture shows her at "seepytime"( as she calls it). She loves to snuggle when she's sleepy and gives lots of hugs and kisses. It's a special time! Jodi can now say all of her colors, knows her prayers at bedtime and for meals, and is using more English words overall. I love hearing her little accent when she tries to say new words.

Now for the not so fun part. We had her CT scan and preop today. She is so well behaved for these medical professionals. We were shocked that she laid still for her CT scan so they didn't have to sedate her. Baba stayed by her side and kept her calm. We are scheduled to go in on May 22 and look forward to saying that all went well. We are incredibly grateful for the love, encouragement, and support you have all given us. It really sustains us when the fear starts creeping in. Much love to you and your family today.

Medical Update

Hi all loved ones! We've had an intense couple of days and I wanted to update you on what we have found. Jodi had a 3 hour MRI on Wednesday as well as an xray. It was a long wait to say the least! It was painful for Baba and I to help hold her still for her xray while she was crying. Not fun but as usual Jodi was such a brave soul and handled it incredibly well. They told us that she would be drowsy and grumpy from the anesthesia used during her MRI. She was neither but the same can't be said of Mama!! Everyone has been so kind to her.

Today was the toughest day. We met with her pediatric neurosurgeon at Baptist after he reviewed her MRI. We were saddened to learn that her condition is much more involved than we realized. Jodi has a very rare condition in which her spinal cord splits in 2 and is tethered (anchored down) at several places where it should not be. She also has many bony abnormalities as well as an area of probable spinal fluid that should not be there. They described her physical condition as "complicated" and unlike anything they had ever seen. Jodi is scheduled for surgery on May 22 and should be hospitalized for about 5 days. With her condition there are so many unknowns. Fred and I were pretty floored but will work through it.

Here are the incredible parts that make us sure that God is in control. Noone can believe that Jodi is so high functioning with all of her abnormalities. She has such a sweet spirit and cooperated so well today. The nurse practitioner told us that the operating room will be full when they do Jodi's surgery because it is a teaching hospital and her case is so rare and unusual. We took that to mean that there will be alot of expertise and eyes looking out for her during the procedure. Our pediatric doctor Dr. Douglass called this evening to check on Jodi and get an update on her condition. He was very kind and encouraging. We also know that we will be surrounded by prayer and thank you in advance for your faithfulness. We will continue to update as we know more. She is scheduled for a CT scan next Thursday because the surgeon wants further information. There is some question about how the bone has formed in her spine. Scary stuff so we have to keep giving it back to God when the fear takes over. We remain confident that Jodi was meant to be our daughter and we can't imagine life without her. Love to you all and God bless.

Baba's Little Helper

Here's little cutie helping Baba get Aunt Betty's car ready! Jodi is such a good helper and really takes pride in what she's doing.

The only downside we see is that she can't stand to make a mistake. If she messes up or thinks she's hurt someone, she just cries and cries and has to be consoled. She's pretty tough on herself! Overall, Jodi is so sweet natured and very happy. I've been reading various posts on yahoo groups from other parents of special needs kids. I get a little scared by how some say that if there aren't problems with your children now, there will be down the road. I guess that can be said of all children so we'll just take it day by day and continue to pray for our little one.

Jodi's bloodwork came back with good results as did her TB test. So far so good! Wednesday and Thursday will be big days for us as we find out more about our daughter and what her medical needs are. We appreciate your prayers and also your patience with her and us as we continue to adjust to this new life!!