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Callie Stapp Prayer Book Callie (daughter of Joe and Karen Stapp) was born with DiGeorge Syndrome with a missing thymus and limited parathyroid function. She also was born with a congenital heart defect called Pulmonary Atresia with a VSD with Multiple Aorto-Pulmonary Collateral Arteries. Click the Dove to add your entry |
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204 entries in Guestbook. Accessed 737 times. | |
| Entry: 412 Date: Mon, Feb 8 2010 17:28 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
updates Callie is still holding her own. Lots of fevers but seems okay otherwise. Noah and Cozy are back at school. I'm still sick as a dog. Joe is doing better. We got a post office box due to issues with mail theft. Our new address for all that do mail correspondence with us is: Stapp PO Box 2017 Dawsonville, GA 30534 Callie's surgery with Dr. Hanley is scheduled for July 14. Will update, Karen |
| Entry: 411 Date: Fri, Feb 5 2010 15:05 | |
| Name: | carole for karen |
| Site Rating: | 10 |
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Please pray for Callie's lungs! carole for karen Karen called to ask that we pray for Callie and the whole family who are sick with various forms of the flu. Noah has pneumonia in the middle lobe of one lung and is on antibiotics. Cozy is also home, sick with a gastro-intestinal virus. Joe is sick, but working. Karen is sick and having to lie on the couch. Callie is coughing hard. She was at the doctor's and tested negative for RSV and had a normal white blood count of 9,000. She is feverish, with a slightly high heart rate (130) and her sats are a bit low (77-82). She was put on profilactic antibiotics and Karen is doing chest percussions because the biggest fear is that her lungs will collapse. She is walking around just fine and getting into everything! Please pray that they will all feel much better soon and that Callie's lungs are protected from harm! |
| Entry: 410 Date: Sun, Jan 31 2010 20:36 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
The challenge Callie saw the cardiologist here in GA yesterday, Dr. Videlefsky, one of the most compassionate, competent, gentle-hearted doctors I have ever had the honor of interacting with during this whole boat ride with Callie's condition. He, again, was overwhelmed and teared up on seeing Callie when I told him of the excitement her therapists communicate to me about Callie someday reaching normal in every aspect of her life. Dr. Riski, the facial cranial doctor, seems to believe she can speak normally someday, the occupational therapists believe she will eat orally someday, the PTs think she will walk and run normally someday, and we have been told that she has all the building blocks to function normally cognitively someday. Dr. V said it would be wonderful if we could parade her down the hallways of the hospital that sent her home to die at 2 months old. To this day, they don't give Callie a snowball's chance of making it. Fortunately, this is not the hospital that does her surgeries. Dr Hanley, it seems, thinks he can do more for Callie. VSD closure is not guaranteed but he ordered a cardiac cath with a possible surgery date the following week. Given my interactions with Dr. Hanley, I'm taking the educated guess that he believes he can operate. Dr. Roth, one of Dr. Hanley's collegues told me that Hanley thought Callie had a 50/50 chance of getting the full repair right after the last surgery. After the positive results of her perfusion scan, Dr Roth seemed to think her odds were higher. Given that her perfusion scan is unchanged, I'm guessing Hanley feels he can still do something. Surgeries have been no easy ride for her and we always have red alerts due to complications afterward. I know it has to be done but I'm not looking forward to it. Since Callie's condition doesn't seem to require emergent care, it is likely we won't be going for several months. Our big challenge is getting in touch with Dr. Hanley's administrative staff to get this scheduled. To those of you that have followed our story, I'm giving you the cyber wink as you know who I have to get through. Prayer would be appreciated. Noah and Cozy are fine. Cozy is signed up for soccer again. She is turning into a gifted little athlete. Noah is my bookworm. He is now reading the classics, Black Beauty, The Wizard of Oz, and Tom Sawyer. I was told that he would be significantly delayed and here he is reading Mark Twain at 8 years old. Never except a diagnosis as gospel. I am having the great drive or fly debate with myself right now. Not sure what to do. Everyone is saying whatever I think is best and honestly, I don't have a clue. Again, prayer is appreciated. Her heartrate has been unusually high the past couple of days (145) with sats mildly low (79). She has her sister's cold and I am hoping that is the cause of it. Her activity level is fine. She caught a piece of the show Glee on youtube and has been singing All the Single Ladies by Beyonce ever since. It's kind of funny. She also likes the Phineas and Ferb song Gitchy gitchy goo baby I love you. I am wondering if there are any artists looking for some freelance work that might want to contact me. I'm self publishing a short story and need someone to create 6-10 illustrations in whatever media they desire. Anyway, for more info, you can email me at nccmommy@yahoo.com Will update, Karen |
| Entry: 409 Date: Mon, Jan 25 2010 8:55 | |
| Name: | Karen |
| Site Rating: | 10 |
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Here we go again Dr. Videlefsky finally got in touch with Dr. Hanley. Dr. Hanley wants Callie's cardiac cath done in California with surgery being possibly the following week. We desperately need prayer not only for Medicaid to be willing to pay for this, but being able to get Noah and Cozy care during the surgery and recovery, getting Callie out there, being able to afford this all, and most importantly that she survive the surgery and avoid any complications from it and that the srugery be a success. IF Dr. Hanley chooses to do surgery, this could be the one that allows her to be pink and have normal O2 saturations. This will be the sixth time Callie has been out to California in the past four years. We are ALL exhausted. Although we are glad that Dr. Hanley feels that there is more that can be done with Callie, none of us are ready for another battle in Caifornia. Please pray for God's provision for us. Callie was fine at the dentist, however, I forgot to get her a round of antibiotics before the appt. Mommy dropped the ball. We have to reschedule the appt. I'm not sure when we will be in CA. Will update, Karen |
| Entry: 408 Date: Wed, Jan 13 2010 15:56 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Home We arrived in GA late Thursday evening without event. Overall, the kids were great, with the exception of a few backseat meltdowns. For kids, they did very well. Callie was a trouper. We nighted over in Manassas VA. Still unpacking now. School was cancelled in GA today as the snow has followed us down south. Dad is leaving on Sunday, I believe, to fly back up to Massachusetts. The trip was great to MA. Callie proved a little more difficult to manage outside of the home than I thought - all due to the ostomy. I could never take her anywhere without laminate flooring and plastic covers on all mattresses and upolstery. No word from Hanley. I put in 5 calls to Dr. Videlefsky over the month and not one has been returned. I have no idea what he plans to do with Callie. I'm putting another call in as I'm writing. I'm on hold right now. She seems to be in good spirits. Dad and the other two kids haven't gotten off the Wii since we set it up. Everyone is doing well. Will update, Karen |
| Entry: 407 Date: Mon, Jan 4 2010 20:22 | |
| Name: | Karen |
| Site Rating: | 10 |
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Sometime tomorrow.... Packing to leave tomorrow. Please pray for traveling mercies as they sure did come in handy on our trip up. Cal is fine. All of us are eager to get home, that is, except for Noah, who is dreading going back to school and would be eternally content playing playstation 2 all day long drinking coke and eating pizza in Grandma's basement. All good things must come to an end. As with most Christmas trips, as far as stuff goes, we've expanded - exponentially. Trying to figure out how to pack and what to pack. Clothes and medication first, as far as toys, the kids will have to pick a couple of favorites, plus the Wii - gotta have the Wii. The rest will have to be shipped, I s'pose. So anyway, we are embarking on a long frustrating night of packing and making things fit that in no way according to the law of physics should fit. Will update if there is WiFi access on a midway hotel, otherwise I'll call Carole. All is well, Karen |
| Entry: 406 Date: Sun, Jan 3 2010 13:49 | |
| Name: | Karen |
| Site Rating: | 10 |
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Christmas/New Years update First of all, I have to tell you that everyone on the planet should have a Nurse Terrie. Terrie is Dr. Bulos's nurse, our local PCP. Since Medicaid refused to pay for Callie's meds in MA, and the copay for Prevacid for only 2 weeks was 225 dollars, nurse Terrie, after trying to negotiate with the local CVS, purchased Cal's Neurontin and Prevacid down in GA, cold packed it and expressed it to MA - all on her own dime. Without Terri, there would be no vacation in MA. I was unable to renew the prescriptions in GA in time because they were up for renewal until after Christmas. Joe had to overnight some ostomy supplies twice up here as she has been tearing through them too quickly. One thing we forgot was her belt, that didn't help matters but Joe sent that up too. It is snowing pretty heavily here now in MA. We'll soon be driving down south with Dad to GA when things settle weather-wise. Callie had her ups and downs. Nights are often bad with coughing and secretions. We had a few scares with her but she seems well now. I went to Plymouth and saw my Aunt as well as a surprise visit from cousins Michelle and Amaya. It was the first time that I or Callie have ever met Amaya. I also got a chance to see two old friends from my teenage years, Warren and Kate, with five of their kids! Callie was a little more work to manage than I thought. I realized that with her ostomy, going anywhere was impossible. She is also perpetually bored and needs to wander around and explore continually. Restaurants are NOT an option with her. With the way she was busting ostomy bags, I couldn't possibly think of bringing her to someone's house. My aunt and uncle were quite patient with Cal although I had to strip the sheets of their bed every night. I'll be rejoicing the day she gets her re-anastamosis. Here in Wilmington, she follows Papa around the house all the time still asking him to draw Pepperoni Pizza after Pepperoni Pizza on her green-draw (Magna Doodle). She asks for him when she wakes up and when she goes to bed. I think Callie wants to keep Papa. Noah and Cozy are on the Wii and bickering constantly as one refuses to lose to the other. Callie seems content and wanders freely around the house. We will have a slew of appts to get to when we get home. Still no word from Hanley's office. I will have to follow up when I get back. Those of you that have followed us for a while know the struggles we have with Hanley's administrative staff. Anyway, all is well, Will update, Karen |
| Entry: 405 Date: Tue, Dec 29 2009 14:21 | |
| Name: | Karen |
| Site Rating: | 10 |
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Man! She was a bear last night. In Mass, I sleep with her in the queen size bed in the back of the house. She writhes and coughs and screams and digs her toes in my back all night. It's times like that that I have to dig up as much maternal patience as I can. Anyway, she woke up okay. She is interacting with Noah and Cozy and doesn't seem as irritable. Seems fine but that's Callie. She goes down in a second but springs back just as quickly. I'm relying on our well learned strategy of rolling with the punches. Tonight, I will attempt to take Callie and the minivan down south to Plymouth for a few days. The weather seems clear aside from the fact that the wind chill factor is about a bazillion below zero. Twenty years in Arizona and Georgia have made me a weather wimp I guess. Please pray for Callie's continued recovery from whatever ailment is pecking at her. The kids will go see my little brother (Uncle Johnny) for a day or two and Mom and Dad get to reclaim the house for a few days. Appreciate your prayers. Will update, Karen |
| Entry: 404 Date: Mon, Dec 28 2009 14:01 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Waiting There is a second benefit to a social networking site like Carepages, the first benefit is prayer and the next is info. I had my reservations about the local clinics here, questioning first how they would treat a child like Callie and secondly whether they would shunt her to Boston anyway. Children's in Boston often takes the number one spot in the country for Children's hospitals, alternating for the number one spot with Philadelphia. I've gotten several warnings from people about Lahey and Winchester and how I would be less likely rolling the dice for competent care in Boston. So, whatever happens, it'll be straight to Boston for us. She is in good spirits right now. She adores her Papa who seems to be the only person that can make her laugh right now. I posted her Christmas pix on facebook for those interested. My gallery here is full so to add a pic here, I have to delete one. It's snowing pretty heavily here in the north shore of MA, not sure if this will end up with a storm or not. So we are just watching and waiting. Thanks for the prayers and the info. Will update Karen |
| Entry: 403 Date: Mon, Dec 28 2009 13:59 | |
| Name: | Karen |
| Site Rating: | 10 |
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What the doc and hospital said... Terri from Dr. Bulos's office called back. Dr. B is willing to call in antibiotics (broad spectrum) to the local CVS but wants to wait until (or if) she spikes another fever. With children like Callie, Drs are more willing to prescribe antibiotics than with healthy children. The hope is that this is just viral. However, this comes with potential consequences if this is upper respiratory with her predisposition for lung collapse. The most dreaded scenario is endocarditis which is a heart infection due to a foreign object in her (the shunt). The possibility of a UTI is there as she is complaining of something in her diaper area as well as a headache. Dad went to Lahey clinic and they told him that they have to take her however, Winchester hospital has a pediatric dept. At least we have a path paved out on what to do if things get bad. I am reluctant to go to Boston as I don't want to drag her out into the city when I she really needs is a CBC and a flu swab that can be done anywhere. Anyway, this gives you an idea of the things we need to consider when Cal gets a fever. So we'll wait out to see if she has another fever or any dramatic changes in her behavior. She's irritable but letting Papa draw her a pepperoni pizza on her Magna Doodle (green draw). Please pray I come to the right decisions. Thank you so much will update, Karen |