|
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 |
|
186 entries in Guestbook. Accessed 311 times. | |
| Entry: 394 Date: Wed, Nov 11 2009 16:11 | |
| Name: | Mary Williams |
| From: | Orlando Fl USA |
| Web Site: | Reign-bo |
| Site Rating: | 10 |
| Comments: | This is a beautiful site so we can pray for Callie you never can have enought prayers. The Williams family is praying for you through Jesus. God Bless You. Love The Williams family |
| Entry: 393 Date: Tue, Nov 10 2009 19:24 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Vaccinated today Unsure if anyone will receive notification without me marking things as urgent, however, I feel it's unfair to you to do that. I also don't want to be the Mom who cries wolf too many times in case there is a legitimately urgent update I need post and everyone is burned out on the urgent updates in their inboxes. So, that's a long winded way of saying I'm not going to post things as urgent unless they are truly urgent and hope carepages either fixes this issue or that most folks with check in when they get the chance. I'm grateful you've stuck with us through all of this. Callie is singing in the back room and I'm waiting for Nurse Giovanna to come at 9am. Dawsonville has been given 100 H1N1 vaccines. Three of them have been allotted to Noah, Cozy, and Callie simply because of Callie's delicate medical issues. Today, she'll get vaccinated. The PT came last week and told me her son had the swine flu. We both decided it be best for her not even to walk through our door as one can be contagious and symptom free for up to 48 hours before even feeling that first tickle in the back of your throat. No word from Hanley. I am hoping our next visit with the local cardiologist will yield some news about Callie's condition. Generally, it is Dr. Videlefsky who gets first news from Stanford about what conversations are happening about Callie. The orthotics are working well and she walks fantastic. Her secretions are still awful. The facial cranial doc said the inside of her mouth looks like she has bad reflux as did the ENT who said her voicebox was horribly red. She is on the maximum dose of Prevacid and she has an allergy to Reglan so I'm not sure what else can be done for that. Medicaid now isn't paying for Neurontin or Prevacid. The co-pays aren't that bad but it's just scary how so quickly things are changing. We never know what isn't going to be paid for month to month. The pharmacists are going nuts. It's a small town so we are quite close to our local pharmacist, an elderly man named Jack. Fortunately, they've been good about giving us rescue doses of medication when Medicaid refuses things. Jack has been on a rampage about the changes to Medicaid and assures us that we aren't the only ones dealing with this. I know with all of you, I am preaching to the choir. We are hopeful Callie may be turning a corner with her My Little Ponies obsession to Spongebob which I find much more palatable. Hey, it's the little things in life. She already has the theme song down in it's entirety. Joe's folks are coming down from MN to GA for Thanksgiving and as I posted previously, God willing, we will be going to MA for Christmas to see my friends and family. I've been getting shots between my toes every two weeks to treat Neuromas in my feet. They are hoping that 7 shots of ethanol into the nerves should kill them. The process is quite painful but I am hopeful that I can begin to run again once my feet are restored. I've not been able to run since I became pregnant with Noah so I am excited at the prospect. Anyway, all is well, will update, Karen |
| Entry: 392 Date: Sat, Nov 7 2009 12:22 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Carepages issues - no emergency First and foremost, everything is okay. Carole said she heard rumor that carepages is only sending notifications for updates marked urgent and that if you want to receive notifications again, you'll have to resign. Again, none of us know for sure but may be worth a try if you aren't receiving any notications at all. Callie is fine. Walking, talking, yelling, bored, obsessed with My Little Ponies. Her Magna-Doodle is her favorite toy. She continually asks us to spell things for her, like Galaxy and Sun. She has great word recognition and can read single words quite well. We will be attempting a trip up to Massachusetts this Christmas provided Dr. Hanley doesn't give word that it's time for another bout at Stanford for Callie. I am desperate to see my friends Sandra and Ellie. We've hit our stride. Callie's life is full of fine details from an administrative standpoint with meds, appointments, therapists and the like. I've let a lot of things slip through the cracks recently. It's hard to do Cal's updates without being too self disclosing and I've defaulted to abandoning carepages altogether at times. Again, I apologize and I'm trying to get better. Those that have committed to Callie in prayer are an integral part of her healing and I don't take that lightly. Will update, Karen |
| Entry: 391 Date: Fri, Nov 6 2009 20:24 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Facial Cranial doctor We saw Dr. Riski yesterday. He is a DiGeorge specialist who was particularly enthusiatic about Callie. He said he is convinced that someday she will articulate like a normal child. He also thought she could normally eat someday. I know there are no guarantees in life but everything we hear about Callie seems extremely hopeful. 4 years ago, our dream was just her survival, now it is our dream that she thrive. She continues to walk better. We've not heard from Hanley about the next surgery. Not sure if no change means a good thing or a bad thing. Dr Videlefsky (our local cardiologist) said he thinks this may be good but ultimately Hanley will call the shot. If he tells us it's a go, it's another round at Stanford. I'm sorry about not posting lately. Please bear with me for a little longer. Callie is out swinging with nurse Michelle. The kids are well. Supplies seems to come in as we need them like they fall from heaven. I can't complain about anything. God is good to us.j Will update, Karen |
| Entry: 390 Date: Sat, Oct 17 2009 16:13 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Perfusion scan Callie has her perfusion scan scheduled for this Wednesday morning. The results of this will be sent to Dr. Hanley and then he will make the decision whether to do the final repair and when. The perfusion scan will have to be done when she is sedated. Other than that, it's not a very risky procedure although all procedures have some risk to them. We also have an appt with a facial/cranial doc and are on the short list for any cancellations for the one and only special needs dentist in the state. Callie was fitted for orthotics that we are told we will receive soon. This will allow her to walk with straight ankles. Our local PCP has reserved a swine flu vaccination for Callie as well as Noah and Cozy to give her the most protection possible. She continues to do well. She bores easily. Being attached to the pump makes getting out and about difficult. The house is a giant toy room with "My Little Pony" running continuously in the background. She craves the outdoors though, asking continuously to go out back and swing. The heavy rains here in GA haven't allowed that to happen a lot of this past month. She is definitely getting cabin fever though, which is a good thing. She is eager to sit down at the table with Noah and Cozy when it's time to eat and wants what they are having. She'll put it to her lips to touch or fling it onto the floor but never eats. She will spent hours standing on a footstool at the sink of the kids' bathroom splashing in the water and walks around the house looking for something new to get into. She prefers to hold on hand on the wall or furniture for support as she is not confident to walk on her own, although she can if she puts her mind to it. I have her yearly meeting for county therapy this Tuesday. We are fighting for speech therapy. I am hoping for your prayers that she will be able to get some. Joe, Noah and Cozy are camping with scouts in Gainesville this weekend. It's in the fifties and drizzling, definitely not my cup of tea but they seemed happy when I talked to Joe this morning. Will update, Karen |
| Entry: 389 Date: Fri, Sep 4 2009 13:54 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Doing well Callie is comfortably using full sentences now and is progressing remarkably cognitively. She still is terrified to make more than a step on her own without holding on to something but those of us that know her well as well as her physical therapist know that she "can" she just won't. In her own time she'll work up the courage to step out on her own. We are trying to figure out how to get the orthotics she needs. Because she wasn't able to walk normally or learn to walk at the appropriate time, Callie's feet turn inward when she walks. This puts considerable pressure on her knees and thighs. Temporary orthotics are necessary to straighten out her ankles so she can learn to walk normally. The kids are enjoying 1st and 3rd grade as well as Daisies and Cub Scouts. All is going well. As always, and like many people, we covet prayer for a dependable source of income and medical care. It's a tumultuous time for everybody, I think. Will update, Karen |
| Entry: 388 Date: Fri, Sep 4 2009 13:52 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Still here Callie continues to do well. We are running off of supplies we hoarded in the months before her trip to Stanford. There is no longer formula coming in and medicaid refuses to pay for her mickey buttons and extensions. Please pray also, that someone will provide her with ostomy supplies. Callie had her appts with the ENT, the gastroenterologist, and the cardiologist. All were amazed with her and how well she is doing. Callie's reflux/secretions are getting worse. The ENT said her voicebox was very red and irritated which strongly indicated reflux but her gastroenterogist wants her to see a cranial-facial expert to check her submucous palate and other parts of that area. Apparently, this is a common place for DiGeorge children to have problems. Another name of DiGeorge Syndrome is VCFS meaning Velo-Cranial-Facial-Syndrome. We are fighting to get some speech therapy for Callie but have been unsuccessful. If it weren't for our PCP and his nurse, we would probably not get much care at all for her. Nurse Terrie has been our gift from God. If I were to ask for one prayer, it would be to get some supernatural mileage from our remaining supplies, like 8 days of fire from 1 day of oil. Also, that we can get medicaid to provide Callie with what she needs. Her next cath will be in November I'm assuming. From there Hanley will make the big decision. I owe you all an apology about my uncharacteristic lag in updates. It's difficult to explain but I am grateful for all your prayers that all of us can return to some sense of normalcy. This constant battering of surgeries, departures, admssions and the like has taken it's toll on all five of us. Cozy finally found my cell phone tucked away in the back of the minivan. I apologize to anyone that has tried to call in the last month and a half and I haven't returned the call - middle age has set itself firmly in my brain, I think. I can be reached at our landline in GA. The kids are adjusting well to school and Callie seems to be content at home, if not just a little bored. Her favorite show is Baby MacDonald (Baby Einstein) interspersed with her regular "Little Ponies" shows. Physically, Callie is doing fantastic. We couldn't ask for more. With some orthotics and feeding therapy, there is a strong possibility we can get her walking and eating soon. The prayer and the challenge is getting her the therapies she needs. Callie is cheerful, talkative and interactive. The fruits of all your prayers are evident in her. Will update, Karen |
| Entry: 387 Date: Thu, Aug 27 2009 11:00 | |
| Name: | Joe |
| Site Rating: | 10 |
| Comments: |
New Update Sorry for the delay in updating everyone. Callie continues to do well at home. She has a great deal of congestion in the morning, but we are hoping this will possibly be fixed by having an ENT take out some of the extra tissue near her throat. This is something that is common in kids with DiGeorge according to an ENT at Stanford. She said if the tissue is reduced, the effusions will be lessened. We're hoping this is true since the congestion sounds much worse to me than in the past. Obviously, moving her on her side and elevating up her head helps, but she tends to shift around throughout the night. Other than the congestion in the morning, she is happy and becoming more talkative. It's pretty clear she's happy to be home once again. Noah and Cozy are great at playing with her. Callie's pretty happy if she has her My Little Ponies and has some time to swing in our back yard. She could swing for an hour if we let her. I think she appreciates things more than we do since, due to the hospitalizations, she hasn't had as much opportunity to explore as most kids her age. She has some work to do to start walking on her own, talking fluently for her age, and eating. The walking deficit is mainly due to the need for her body to process oxygen more efficiently; she tires very easy right now. When she walks a short distance, she pants as though she's run a race. This will improve as her body accommodates. The talking and eating will eventually come as well. The oral aversion is still pretty significant, but we have an OT that is great at working past the anxiety. Thanks for all of your prayers. We will do better at updating. Joe |
| Entry: 386 Date: Fri, Aug 21 2009 19:47 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Home! Lost my phone and had brief access to wifi in one hotel on the trip back home. I am very sorry to not have updated. We took the northern route back to GA from CA on the 5th of August. We arrived yesterday afternoon. Cal is no worse for the wear however getting things re-organized and life back together again is proving more difficult than it has in the past. Noah and Cozy started school yesterday. Nurse Michele returned kitty Autumn to us this morning so we are again all under the same roof. Callie didn't quite get the whole birthday concept but Papa flew in to CA on that day and gave her a toy. We are planning to celebrate Cal's birthday as well as Noah and Cozy's homecoming with a party here. Again, I am so sorry for not updating. I am available on my landline now. Now we have to re-establish therapies and services for Cal. Please pray that Joe find work. We are grateful for your prayers. Callie continues to thrive. Will update, Karen |
| Entry: 385 Date: Wed, Jul 29 2009 14:42 | |
| Name: | Karen |
| Site Rating: | 10 |
| Comments: |
Ups and Downs She's been sick some days and well some others. Between the delicate shifts she is vulnerable to with fluid, ativan and methadone withdrawl, boredom and general post-op fatigue and pain - it's hard to figure Callie out. There were several days when she was exceptionally irritable and sleeping more and more - up to 19 hours a day. Eventually she stopped urinating. I brought her into the hospital and to our delight it was just a case of dehydration. I say that because of all the things she could be contending with, dehydration is the most easy to remedy. Part of the problem is that Callie now does not need, apparently, as many diuretics as she had when she first admitted. She spent the day in the hospital getting a bag of saline. They also modified her home dose of diuretics so hopefully Callie will do well now. The other thing we have to watch out for is the other side of the coin of dehydration - pulmonary edema - which can happen quite quickly if her body can't get enough fluid out. So far, I have not seen that as an issue. She has had small spells of pain and irritation today but overall she is okay. It's hard to distinguish what to be concerned about and what to wait out. They had a July birthday party today for all the July birthdays at the RM house. She carried around a cupcake, she was thrilled. Noah also celebrated his birthday at his Uncle Ben's today. He will be officially turning 8 on July 28th. Other than the setback on Friday, we've been okay. Her behavior was concerning me up until the hospital visit but I feel things are much better now. Please pray she can maintain the right level of fluid. Too much or too little can be very serious. She is having these problems because she has both the ostomy bag and lungs that are in a precarious state right now. She also is a touch lasix dependent so her kidneys need a little help making urine. Despite her complications, she is a spunky little girl. She's discovered Wonder Pets now. Will update, Karen |