Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Hello Everyone It has been some time since we updated you on JD and his sister Olivia. JD is doing relatively okay. He had a visit to Dr. Copenhaver this week for monthly clinic. Usually Dr. Gelfand is the physician that checks JD at vent clinic but he was out of town and Dr. Copenhaver (his partner) took his place since he is quite familiar with JD. JD had a very long vent clinic but it appears we came away with some positive results. First off, JD's blood gases were very good in the mid to high 30's. Dr. Copenhaver is pleased with JD's lungs at this point and even said that JD is taking much better breaths by himself. Dr. Copenhaver agreed to increase the time off the vent for JD so his vent weaning will continue. JD has been upped to off the vent three hours twice a day and he seems to be handling this fine with O2 saturations in the upper 90's to even 100. If all goes well we will progress to 4 hours twice a day off the vent soon and then progress to five hours twice a day off and then to six hours twice a day off. We then will call Dr. Gelfand/Dr. Copenhaver for further instructions. We suspect JD will do fine with this since we actually had him vent free right before winter in October but then RSV hit him and he was placed back on under CPAP mode. Dr. Copenhaver has also agreed for us to start trying to wean him off Oxygen at night. Before vent clinic, JD was using about 1/16 of a liter of oxygen ( a mere wisp of O2 if I might add) at night as ordered for his sleep apnea. We have been noticing that JD may not need this . We have started taking JD off of O2 1 hour before he wakes up in the morning and he has been handling that without any problems. We will progress adding an extra hour off as JD continues to tolerate it as the weeks go by. JD had some blood work done at vent clinic to assess his needs for tegretol ( a drug he was placed on for suspected mild and I mean very mild seizures in January) and to assess if his Synthroid (Levothyroxin) needs to be upped. Many of you know that JD was born with hypothyroidism and has been placed on Synthroid since birth to give him regular thyroid function. His blood work indicated normal thyroid hormone levels so at this time his synthroid will not be increased by the dose. JD will probably be taking synthroid for the remainder of his life. Tegretol is a drug that is used to combat seizure activity. We have never witnessed any seizure activity with JD and his blood work indicates that he may not have to take this medication. We are being referred to a neurologist at Childrens for further instruction. It is our belief that JD is seizure free and has been since birth. Finally, there was one important area addressed at vent clinic that is becoming an issue. JD is not gaining much weight. We are going back to see Dr. at Childrens for evaluation and JD may not have to have his special anti dumping formula anymore. It is possible that JD may have outgrown this and can return to a Pediasure diet. We have been ordered to step up his feedings to 150 ml or 5 ounces 5 times a day in a fifteen minute span via G-button. This may help but we will get the answers we need from Dr. at Childrens. JD is currently 23 lbs and 31 inches. He is growing taller just not gaining much weight. We have also got JD approved for a swallow study to assess if JD is ready to start eating and learning to eat by mouth. JD is already experiencing some small feedings by mouth at home and as far as we can tell he is swallowing and not aspirating the foods into his lungs. This will be a big step if we can get this done with positive results so that his Speech therapist can start to initiate JD learning to take in foods by mouth in large quantities. JD currently has eaten some bananas (Gerber #1) and some vanilla ice cream. These were given in very very small bites by us and Shelli his day nurse. But the results we have gotten are positive. We both feel JD got a very good report from vent clinic and is still progressing. Next up for JD will be an MRI under anesthesia next week to give Dr. Brown a thorough assessment of his first nose surgery. This will tell us what Dr. Brown needs to do next in a second surgery since everything was not able to be completed the first time. JD will also have his swallow study and visit with Dr. soon about his feedings. We feel JD is becoming a much happier little man since he has learned to sit. He loves to sit and watch TV and play with his toys. His balance sitting is very good. JD is starting to do so many things that Olivia does. He watches her and he is learning from her. One instance, Olivia has learned to kiss her mommy and daddy. JD has been watching her and last Sunday, Mandy caught JD leaning forward towards me and wanting to kiss me. I complied and JD got to kiss his Daddy and Mommy was so proud of him. I believe Mandy was deeply touched by the bonding experience that I had with JD. We are now working with JD to get him to bear weight so that he may learn to stand. Olivia continues to blossom. Olivia has took a liking to the phone and our cell phones and is notorious now for calling people. We honestly dont know how she is doing it and she does it when we arent looking. She has even called as far as Mexico to talk to someone she doesn't know along with other relatives she calls just about every week. Honestly we dont know how she does it. We suspect Olivia is very intelligent. She already has a pretty good vocabulary for a 21 month old. Her pediatrician Dr. Shirley Joslin said last week in a visit that she was highly advanced for her age. We have successfully weaned Olivia off of all baby foods and graduate foods and she is eating table food now. We are experimenting and finding out exactly what she likes and doesn't like. It was feared earlier in the year that Olivia might be allergic to fruit juices but we have found that she isnt and she likes Caprisun and Crystal Light drinks. We have to be careful because some fruit juices do break her out in a rash. We still arent completely comfortable with this switch yet. Olivia is now 28 lbs and approx. 34 inches in length. Heres the big news. One morning about a week ago Mandy discovered that Olivia's diaper was dry when she got her up. She took her to her training potty and Olivia went to the bathroom in it for the first time. So we are trying to begin the potty training with her. Mandy and I are doing okay and trying to enjoy our summer. I am still working every day and unless we go on a short vacation I will continue to work daily during the week. Mandy is enjoying her time off. We recently went to see Kenny Chesney in concert in Frisco at Pizza Hut Park. Mandy had told me that she really had never been to a big concert before a while back. We both like Kenny Chesney so we went. It just so happened to be June 16 (the day it rained so much) We got there at 6 and were rained on till 9 pm. It was pouring rain through the opening acts of Swift and Sugarland. But we still had a blast. It stopped raining about the time Kenny came on stage. Kenny was good and rocked the entire stadium. I recommend seeing him in concert to any of you who are his fans. We plan on going again when he is here again. We hope all is well with you. We will update you more when we know more. We have a bunch of doctors appt for all of us this week. I for one will visit with Dr. Brad Gamble (Mandy's ENT) concerning my nose and recurrent sinus infections and a possible upcoming surgery of my nasal septum. Mandy had an ingrown toe nail removed last week. We have many more appts upcoming with all of us. We will update you soon. As you can see, God has been at work as He is daily in our lives. The miracle at work with JD is ongoing. We something new with him everyday. Until the next update, we remain firmly In His Grip. We remain as servants to a risen and alive Lord who is Jesus Christ. May the peace, love, mercy, and grace of our Lord Jesus Christ be with each of you. In His Loving Hands and still holding onto that rope, &, parents to twins: Olivia : potty training,walking, running the house, talking, saying no all the time and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube, Trach, on CPap w/ O2 at Night, severe to profound hearing loss, dumping syndrome ) 21 months, Waxahachie, Texas _www.chargesyndrome.org_ (http://www.charge/) ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Love those good reports! Imagine Miss Olivia maturing in leaps and bounds, and JD learning to follow in her footsteps. Eveything sounds very tiring, and very promising as well. Good to hear! ;-) in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 , this is a wonderful update--so many good things are coming to the forefront in terms of the children's progress. JD and Olivia are very lucky to have such lovely and committed parents who are guaranteeing their success. Thank you for these stories--they are uplifting and wonderful. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 I am always glad to hear a good update, I hope you continue to have a wonderful summer!!!! Hugs, Crystal and Eva > > Hello Everyone > > It has been some time since we updated you on JD and his sister Olivia. JD > is doing relatively okay. He had a visit to Dr. Copenhaver this week > for monthly clinic. Usually Dr. Gelfand is the physician that checks > JD at vent clinic but he was out of town and Dr. Copenhaver (his partner) > took his place since he is quite familiar with JD. JD had a very long vent > clinic but it appears we came away with some positive results. First off, JD's > blood gases were very good in the mid to high 30's. Dr. Copenhaver is > pleased with JD's lungs at this point and even said that JD is taking much better > breaths by himself. Dr. Copenhaver agreed to increase the time off the vent > for JD so his vent weaning will continue. JD has been upped to off the vent > three hours twice a day and he seems to be handling this fine with O2 > saturations in the upper 90's to even 100. If all goes well we will progress to 4 > hours twice a day off the vent soon and then progress to five hours twice a day > off and then to six hours twice a day off. We then will call Dr. > Gelfand/Dr. Copenhaver for further instructions. We suspect JD will do fine with this > since we actually had him vent free right before winter in October but then > RSV hit him and he was placed back on under CPAP mode. Dr. Copenhaver has > also agreed for us to start trying to wean him off Oxygen at night. Before > vent clinic, JD was using about 1/16 of a liter of oxygen ( a mere wisp of O2 if > I might add) at night as ordered for his sleep apnea. We have been noticing > that JD may not need this . We have started taking JD off of O2 1 hour > before he wakes up in the morning and he has been handling that without any > problems. We will progress adding an extra hour off as JD continues to tolerate > it as the weeks go by. JD had some blood work done at vent clinic to assess > his needs for tegretol ( a drug he was placed on for suspected mild and I > mean very mild seizures in January) and to assess if his Synthroid > (Levothyroxin) needs to be upped. Many of you know that JD was born with hypothyroidism > and has been placed on Synthroid since birth to give him regular thyroid > function. His blood work indicated normal thyroid hormone levels so at this time > his synthroid will not be increased by the dose. JD will probably be taking > synthroid for the remainder of his life. Tegretol is a drug that is used to > combat seizure activity. We have never witnessed any seizure activity with > JD and his blood work indicates that he may not have to take this medication. > We are being referred to a neurologist at Childrens for further instruction. > It is our belief that JD is seizure free and has been since birth. > Finally, there was one important area addressed at vent clinic that is becoming an > issue. JD is not gaining much weight. We are going back to see Dr. > at Childrens for evaluation and JD may not have to have his special anti > dumping formula anymore. It is possible that JD may have outgrown this and can > return to a Pediasure diet. We have been ordered to step up his feedings to > 150 ml or 5 ounces 5 times a day in a fifteen minute span via G- button. This > may help but we will get the answers we need from Dr. at Childrens. > JD is currently 23 lbs and 31 inches. He is growing taller just not gaining > much weight. We have also got JD approved for a swallow study to assess if > JD is ready to start eating and learning to eat by mouth. JD is already > experiencing some small feedings by mouth at home and as far as we can tell he is > swallowing and not aspirating the foods into his lungs. This will be a big > step if we can get this done with positive results so that his Speech > therapist can start to initiate JD learning to take in foods by mouth in large > quantities. JD currently has eaten some bananas (Gerber #1) and some vanilla ice > cream. These were given in very very small bites by us and Shelli his day > nurse. But the results we have gotten are positive. We both feel JD got a > very good report from vent clinic and is still progressing. > > Next up for JD will be an MRI under anesthesia next week to give Dr. Brown a > thorough assessment of his first nose surgery. This will tell us what Dr. > Brown needs to do next in a second surgery since everything was not able to be > completed the first time. JD will also have his swallow study and visit > with Dr. soon about his feedings. > > We feel JD is becoming a much happier little man since he has learned to > sit. He loves to sit and watch TV and play with his toys. His balance sitting > is very good. JD is starting to do so many things that Olivia does. He > watches her and he is learning from her. One instance, Olivia has learned to > kiss her mommy and daddy. JD has been watching her and last Sunday, Mandy > caught JD leaning forward towards me and wanting to kiss me. I complied and JD > got to kiss his Daddy and Mommy was so proud of him. I believe Mandy was > deeply touched by the bonding experience that I had with JD. We are now working > with JD to get him to bear weight so that he may learn to stand. > > Olivia continues to blossom. Olivia has took a liking to the phone and our > cell phones and is notorious now for calling people. We honestly dont know > how she is doing it and she does it when we arent looking. > She has even called as far as Mexico to talk to someone she doesn't know > along with other relatives she calls just about every week. Honestly we dont > know how she does it. We suspect Olivia is very intelligent. She already has > a pretty good vocabulary for a 21 month old. Her pediatrician Dr. Shirley > Joslin said last week in a visit that she was highly advanced for her age. We > have successfully weaned Olivia off of all baby foods and graduate foods and > she is eating table food now. We are experimenting and finding out exactly > what she likes and doesn't like. It was feared earlier in the year that > Olivia might be allergic to fruit juices but we have found that she isnt and she > likes Caprisun and Crystal Light drinks. We have to be careful because some > fruit juices do break her out in a rash. We still arent completely > comfortable with this switch yet. Olivia is now 28 lbs and approx. 34 inches in > length. Heres the big news. One morning about a week ago Mandy discovered that > Olivia's diaper was dry when she got her up. She took her to her training > potty and Olivia went to the bathroom in it for the first time. So we are > trying to begin the potty training with her. > > Mandy and I are doing okay and trying to enjoy our summer. I am still > working every day and unless we go on a short vacation I will continue to work > daily during the week. Mandy is enjoying her time off. We recently went to see > Kenny Chesney in concert in Frisco at Pizza Hut Park. Mandy had told me > that she really had never been to a big concert before a while back. We both > like Kenny Chesney so we went. It just so happened to be June 16 (the day it > rained so much) We got there at 6 and were rained on till 9 pm. It was > pouring rain through the opening acts of Swift and Sugarland. But we still > had a blast. It stopped raining about the time Kenny came on stage. Kenny > was good and rocked the entire stadium. I recommend seeing him in concert to > any of you who are his fans. We plan on going again when he is here again. > > We hope all is well with you. We will update you more when we know more. > We have a bunch of doctors appt for all of us this week. I for one will > visit with Dr. Brad Gamble (Mandy's ENT) concerning my nose and recurrent sinus > infections and a possible upcoming surgery of my nasal septum. Mandy had an > ingrown toe nail removed last week. We have many more appts upcoming with all > of us. > > We will update you soon. As you can see, God has been at work as He is > daily in our lives. The miracle at work with JD is ongoing. We something new > with him everyday. > > Until the next update, we remain firmly In His Grip. We remain as servants > to a risen and alive Lord who is Jesus Christ. > > May the peace, love, mercy, and grace of our Lord Jesus Christ be with each > of you. > > > In His Loving Hands and still holding onto that rope, > > &, parents to twins: > Olivia : potty training,walking, running the house, talking, saying no all > the time and JD(cHArgE: Choanal Atresia, Heart Repair, TE-F Repair, G-Tube, > Trach, on CPap w/ O2 at Night, severe to profound hearing loss, dumping > syndrome ) 21 months, Waxahachie, Texas > > _www.chargesyndrome.org_ (http://www.charge/) > > > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
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