Tuesday, May 26, 2009
May 12, 2002
From Jenny and Jason to our family and friends,
Welcome to Benjamin's 1st Adventure website. Here you will find the official updates of Ben's condition. Thank you for all the prayers and good wishes. They are working. Please, don't stop.
Benjamin Alden was born three weeks early on Thursday, May 2nd, 2002, at 2:28 p.m. He weighed 7 pounds, 7 ounces and was 20 inches long. The pregnancy had been complicated with 8 weeks of pre-term labor involving bed rest, medication, and several hospital and doctor's visits. Benjamin was declared healthy at birth and his first 28 hours of life were joyous.
Then suddenly, while nursing, Benjamin stopped breathing. He was rushed to the nursery where a team of doctors and nurses worked on him for 15 minutes. Finally his heart and lungs began working again. He was taken to the NICU (Neonatal Intensive Care Unit) and put on a ventilator, monitors, and IVs. They put ice around his head to prevent swelling. At this time, Benjamin probably had some seizures. Over the next few days, Ben began to stabilize. Then on Wednesday, May 8th, Ben pulled his breathing tube out and went into respiratory arrest again. The doctors worked with him for about 25 minutes before he returned to us. Since then, Ben has been regaining strength.
His doctors are puzzled. Currently a team of neonatologists, a neurologist, a pulmonary specialist, an ENT, a cardiologist, and his pediatrician are working on an answer. Benjamin has undergone EEGs, EKGs, a MRI, a brain ultrasound, chest x-rays, a spinal tap, metabolic testing, and numerous blood tests, but so far nothing is clear. We are still awaiting the results of metabolic tests that have been sent all over the country. There are two things that concern his doctors the most. First, Ben does not always breathe for himself and the breaths he takes for himself are shallow. Secondly, he appears to have trouble swallowing.
Some of the theories are: 1) That he was born a bit too early and so the kinks in some of his systems haven't quite been worked out. Possibly, they will develop with time and he will grow out of this (we're hoping for this one). 2) He has some type of infant emphysema or apnea where his body just forgets to breathe. 3) Some type of airway obstruction. 4) A some kind of central nervous problem that controls breathing and swallowing. 5) A muscle disorder. 6) A rare metabolic disorder.
Today, May 12th, he is being fitted with a feeding tube. First they will inject it with air and see if it goes through correctly. If so, he will begin getting Mom's milk for nourishment. For now, they are giving him a week to recover from his last episode. Then they will discuss doing a bronchial scope and a CAT scan. Benjamin is stable. He is breathing more on his own and there seems to be some evidence of swallowing. He is awake more and more. He knows his Mom and Dad's voices, and is so squirmy they've had to tie his hands down to prevent him from pulling out his tube again. Mom and Dad are trying to stay strong and patient. We have been uplifted by the support of family and friends, and are rooted in faith, hope, and love. Please keep praying. We've been blessed with so many miracles in the last week, but we still need more.
Welcome to Benjamin's 1st Adventure website. Here you will find the official updates of Ben's condition. Thank you for all the prayers and good wishes. They are working. Please, don't stop.
Benjamin Alden was born three weeks early on Thursday, May 2nd, 2002, at 2:28 p.m. He weighed 7 pounds, 7 ounces and was 20 inches long. The pregnancy had been complicated with 8 weeks of pre-term labor involving bed rest, medication, and several hospital and doctor's visits. Benjamin was declared healthy at birth and his first 28 hours of life were joyous.
Then suddenly, while nursing, Benjamin stopped breathing. He was rushed to the nursery where a team of doctors and nurses worked on him for 15 minutes. Finally his heart and lungs began working again. He was taken to the NICU (Neonatal Intensive Care Unit) and put on a ventilator, monitors, and IVs. They put ice around his head to prevent swelling. At this time, Benjamin probably had some seizures. Over the next few days, Ben began to stabilize. Then on Wednesday, May 8th, Ben pulled his breathing tube out and went into respiratory arrest again. The doctors worked with him for about 25 minutes before he returned to us. Since then, Ben has been regaining strength.
His doctors are puzzled. Currently a team of neonatologists, a neurologist, a pulmonary specialist, an ENT, a cardiologist, and his pediatrician are working on an answer. Benjamin has undergone EEGs, EKGs, a MRI, a brain ultrasound, chest x-rays, a spinal tap, metabolic testing, and numerous blood tests, but so far nothing is clear. We are still awaiting the results of metabolic tests that have been sent all over the country. There are two things that concern his doctors the most. First, Ben does not always breathe for himself and the breaths he takes for himself are shallow. Secondly, he appears to have trouble swallowing.
Some of the theories are: 1) That he was born a bit too early and so the kinks in some of his systems haven't quite been worked out. Possibly, they will develop with time and he will grow out of this (we're hoping for this one). 2) He has some type of infant emphysema or apnea where his body just forgets to breathe. 3) Some type of airway obstruction. 4) A some kind of central nervous problem that controls breathing and swallowing. 5) A muscle disorder. 6) A rare metabolic disorder.
Today, May 12th, he is being fitted with a feeding tube. First they will inject it with air and see if it goes through correctly. If so, he will begin getting Mom's milk for nourishment. For now, they are giving him a week to recover from his last episode. Then they will discuss doing a bronchial scope and a CAT scan. Benjamin is stable. He is breathing more on his own and there seems to be some evidence of swallowing. He is awake more and more. He knows his Mom and Dad's voices, and is so squirmy they've had to tie his hands down to prevent him from pulling out his tube again. Mom and Dad are trying to stay strong and patient. We have been uplifted by the support of family and friends, and are rooted in faith, hope, and love. Please keep praying. We've been blessed with so many miracles in the last week, but we still need more.
May 13, 2002
Well, air did not go through the valve very well. So they won't be feeding him right away. Everything else is still stable.
May 15, 2002
May 15th (part 1) Yesterday another x-ray showed air passing through the bowels, but not quite as well as hoped. Giving Ben food is still a possibility, however. They may try that today. We spoke to the Pulmonary Specialist yesterday. He performed a bronchial scope which showed no blockages. The bronchial scope entailed inserting a tube-like camera down his ventilating tube to look at the upper airways and lungs. He was not able to look at the nasal/throat passages because of all the tubes. This doctor feels that once all other possibilities are ruled out, we may be looking at a condition known as congenital hypoventilation syndrome. Basically, this means that Ben's ability to breathe on his own is somehow hindered. That part of his brain just might not function correctly. This could be treated with a tracheotomy and a portable ventilator. This could allow him to have a somewhat normal life. We are still awaiting the results of three or four metabolic tests. They are attempting to keep him stable while we await answers. Ben really appreciates all the e-mails he's receiving. Thank you Uncle Ian for setting up this great website!!
May 15th (part 2) The highlight of the day was Jenny's opportunity to hold Ben in her arms. Jill, the nurse, asked if we had been able to hold him since his admission and when we told her no, she asked Dr. M (who just took over Ben's care) and he said it would be OK. Jenny held Ben for an hour or two and both of them were so happy. It was beautiful.
Dr. M took over Ben's care and after consulting with Dr. C, the pulmonary specialist, and Dr. B, the pediatrician, they decided to try again to gradually wean Ben off the respirator. He is currently being given twenty breaths a minute, although his nurses say he is consistently breathing on his own as well. They will gradually reduce the number of breaths the machine is giving and hopefully Ben will continue to take more and deeper breaths on his own. This process will probably take days if not weeks.
They are also still concerned about his GI tract but aren't planning any action until they have his breathing under control. The air they have been 'feeding' him has not moved smoothly through. Dr. B said a possible reason for this is a syndrome where a portion of the large intestine has a deficiency in the involuntary nerves that help push things through. He said they often see this syndrome in people who have congenital hypoventilation syndrome. This is also a treatable syndrome but would possibly require surgery to remove the affected portion of the large intestine. The Hypoventilation syndrome and the Hirschprung's (GI tract) syndrome are still both theoretical diagnosis. We are still waiting for the results on several metabolic tests that are pending. However, we did receive news that one of the tests returned with normal results.
Momma holds Benjamin in the NICU for the first time. 13 days old.
May 15th (part 2) The highlight of the day was Jenny's opportunity to hold Ben in her arms. Jill, the nurse, asked if we had been able to hold him since his admission and when we told her no, she asked Dr. M (who just took over Ben's care) and he said it would be OK. Jenny held Ben for an hour or two and both of them were so happy. It was beautiful.
Dr. M took over Ben's care and after consulting with Dr. C, the pulmonary specialist, and Dr. B, the pediatrician, they decided to try again to gradually wean Ben off the respirator. He is currently being given twenty breaths a minute, although his nurses say he is consistently breathing on his own as well. They will gradually reduce the number of breaths the machine is giving and hopefully Ben will continue to take more and deeper breaths on his own. This process will probably take days if not weeks.
They are also still concerned about his GI tract but aren't planning any action until they have his breathing under control. The air they have been 'feeding' him has not moved smoothly through. Dr. B said a possible reason for this is a syndrome where a portion of the large intestine has a deficiency in the involuntary nerves that help push things through. He said they often see this syndrome in people who have congenital hypoventilation syndrome. This is also a treatable syndrome but would possibly require surgery to remove the affected portion of the large intestine. The Hypoventilation syndrome and the Hirschprung's (GI tract) syndrome are still both theoretical diagnosis. We are still waiting for the results on several metabolic tests that are pending. However, we did receive news that one of the tests returned with normal results.
Momma holds Benjamin in the NICU for the first time. 13 days old.
May 16, 2002
Today Benjamin is two weeks old! We really appreciate all the e-mails and well wishes our family receives each day. It really boosts our spirits and we feel you all pulling for us.
We had a good day today. The ventilator was reduced to 15 breaths and may go down to 10 tonight. He is still breathing well above the ventilator. His hematocrit number was very low today due to his many blood tests, so he had a tranfusion. Luckily, Ben was able to receive his Grandpa's blood which had been donated last weekend when he visited. The transfusion will give him the boost he needs to tolerate his future challenges. He seems to be doing well.
We feel like stereotypical new parents telling you this news, BUT Ben had two poopy diapers today!!! His first since admittance to the NICU. This is a good sign that his bowels are doing better than we thought, so maybe he'll be fed soon after all! Mommy hopes so, our freezer can't hold any more milk!
We had a good day today. The ventilator was reduced to 15 breaths and may go down to 10 tonight. He is still breathing well above the ventilator. His hematocrit number was very low today due to his many blood tests, so he had a tranfusion. Luckily, Ben was able to receive his Grandpa's blood which had been donated last weekend when he visited. The transfusion will give him the boost he needs to tolerate his future challenges. He seems to be doing well.
We feel like stereotypical new parents telling you this news, BUT Ben had two poopy diapers today!!! His first since admittance to the NICU. This is a good sign that his bowels are doing better than we thought, so maybe he'll be fed soon after all! Mommy hopes so, our freezer can't hold any more milk!
May 17, 2002
Today was another great day. Benjamin's breath support was decreased to 10 breaths last night and is now down to 5. His doctor will not go any lower than that. They want to see how he does with this for a few days and then put him on a CPAP machine before trying to remove the tube from his throat.
Ben's isolette (bed) has been in the most critical area of the NICU for the last two weeks. Today he "graduated" to a less serious area of the ward.
Benjamin was given Mom's milk today. He is getting one teaspoon through a feeding tube every three hours for now. If this goes well they will increase it and hopefully remove the IV from his head soon.
All metabolic tests have come back and they are all negative!!
Ben's isolette (bed) has been in the most critical area of the NICU for the last two weeks. Today he "graduated" to a less serious area of the ward.
Benjamin was given Mom's milk today. He is getting one teaspoon through a feeding tube every three hours for now. If this goes well they will increase it and hopefully remove the IV from his head soon.
All metabolic tests have come back and they are all negative!!
May 19, 2002
Today has been a great day! Ben was weaned off the ventilator and is breathing well on his own. The tube was taken out around noon today and he handled it well. An ear, nose, and throat specialist used a scope to view Benjamin's upper airway. He believes he has the diagnosis. Ben's jaw is set back more than usual and he has a large tongue. When he is very tired, or feeding, his tongue has the tendency to slide back and block his airway. The doctor believes this caused his first respiratory arrest. For now, they are watching Benjamin very closely to see if this will be a frequent occurrence. They hope to prevent it by keeping him off his back. If it continues to be a problem, they may still do a tracheostomy to keep the airway open. Ben would hopefully outgrow this need by his first birthday. Ben still needs to show that he can breathe and digest continuously before he goes home with us.
This is the best news we could have hoped for. Thank you for all the prayers. They have helped carry us through.
This is the best news we could have hoped for. Thank you for all the prayers. They have helped carry us through.
May 20, 2002
Well, five steps forward, one step back. The good news is the doctors have completely ruled out Hypoventilation Syndrome because Ben has not had a problem supporting his own breathing. They are concerned, however, because he is still not showing much effort in swallowing. This has caused a buildup of secretions in his mouth. Some of the mucus has found its way into his lungs and has caused an infection which they are now treating with antibiotics. They have also restarted his Albuterol treatments to help clear his lungs. The swallowing problem could be a result of his arrests, or it could be part of his initial problem. Hopefully, this too will fade with time.
For now, they have discontinued his feedings, to avoid reflux. The tracheostomy is still a possibility, and there has been talk of a gastrointestinal feeding tube. Still, Ben's stats are good and he's happy to be tubeless! His little fingers have finally found their way to his mouth again. Keep those emails coming. Ben loves it when we read them to him daily.
For now, they have discontinued his feedings, to avoid reflux. The tracheostomy is still a possibility, and there has been talk of a gastrointestinal feeding tube. Still, Ben's stats are good and he's happy to be tubeless! His little fingers have finally found their way to his mouth again. Keep those emails coming. Ben loves it when we read them to him daily.
May 22, 2002
Benjamin has been breathing without the help of any artificial means since yesterday morning. He still has lots of secretions and doesn't seem to be swallowing much. He's been having several episodes (called desats) where he gets a buildup of mucus which lowers his O2 levels and heart rate. It's very scary to watch, but he comes around after a little stimulation, nasal suctioning, and a few puffs from the oxygen mask.
He has been moved to a crib. We were allowed to bring him some toys and clothes from home. Last night we gave him a bath and he was weighed. He now weighs 7 lbs 12 oz. He seems much happier without all those tubes.
The plan for now seems to be wait and see. The doctors want to give him time to recover and see if his number of desats decrease. They will redo the MRI and EEG to see if there has been any changes. They may still do a muscle biopsy.
Because of the high risk of aspirating milk, they have discontinued feedings for now. He continues to be nourished via IV.
He has been moved to a crib. We were allowed to bring him some toys and clothes from home. Last night we gave him a bath and he was weighed. He now weighs 7 lbs 12 oz. He seems much happier without all those tubes.
The plan for now seems to be wait and see. The doctors want to give him time to recover and see if his number of desats decrease. They will redo the MRI and EEG to see if there has been any changes. They may still do a muscle biopsy.
Because of the high risk of aspirating milk, they have discontinued feedings for now. He continues to be nourished via IV.
May 25, 2002
Benjamin has had a busy few days. He was moved back to his original spot, but is still in a crib. He continued to have many scary desat episodes, despite positioning him on his side. The doctors still feel that these were caused by his tongue and secretion buildups. To prevent further episodes, they have replaced the ventilator.
Because the ventilator cannot be a long term solution, he will have surgery on Thursday. The surgery will involve three procedures. First, they will do a tracheostomy. This entails putting a tube in the neck to create a stable airway. We will need to keep this clear of secretions, but it should solve the obstructions until his jaw develops. He will be unable to make any vocalizations for the time being. Secondly, they will perform a gastrostomy. This entails putting a GI tube into his stomach for feedings. He is still having trouble swallowing. Finally, they are going to perform a Nissen Fundoplication. This is a method to solve his reflux problem. They will wrap part of his stomach around the esophagus to prevent food from going in the wrong direction.
He will have an upper GI on Wednesday to further investigate his needs.
Hopefully all these procedures will go well and solve his problems. There is a chance he will grow out of these needs eventually.
We are relieved to finally have some solutions in sight. They are still concerned that this might not be all he needs. We will have to see how his recovery goes.
Please continue to pray for us!
Because the ventilator cannot be a long term solution, he will have surgery on Thursday. The surgery will involve three procedures. First, they will do a tracheostomy. This entails putting a tube in the neck to create a stable airway. We will need to keep this clear of secretions, but it should solve the obstructions until his jaw develops. He will be unable to make any vocalizations for the time being. Secondly, they will perform a gastrostomy. This entails putting a GI tube into his stomach for feedings. He is still having trouble swallowing. Finally, they are going to perform a Nissen Fundoplication. This is a method to solve his reflux problem. They will wrap part of his stomach around the esophagus to prevent food from going in the wrong direction.
He will have an upper GI on Wednesday to further investigate his needs.
Hopefully all these procedures will go well and solve his problems. There is a chance he will grow out of these needs eventually.
We are relieved to finally have some solutions in sight. They are still concerned that this might not be all he needs. We will have to see how his recovery goes.
Please continue to pray for us!
May 29, 2002
From Jason: Benjamin is all ready for his procedures tomorrow. The Upper GI went well. They found nothing unusual with his anatomy, and were encouraged by a lack of reflux. They also determined that everything below his stomach is working normally. His surgery is scheduled for 1:30 pm. The surgeons believe he could be coming home within ten to fourteen days provided there are no complications or additional findings. Before coming home we will be trained to care for all his special needs. While Ben has the trach he will always need to be accompanied by a trained care giver. Please contact us if you are interested in learning as well. Tomorrow's procedures have caused us some anxiety, but we are confident they will allow us to bring our son home soon
May 30, 2002
4:45 p.m. The operation was a success! The G-tube and the trach are in place and the fundoplication went well. Ben is back in the NICU and resting comfortably while the anesthesia wears off. We will post a more complete update as soon as possible. Thanks.
May 31, 2002
Benjamin continues to recover from his surgery. The procedure began at 2 and lasted until 4:30. Everything went according to plan. He was stable throughout and is doing very well. His trach was connected to the ventilator when he came out of surgery, but he is now breathing all on his own again.Benjamin's stoma (the hole that was made to his trachea) will need to heal over the next few days. The ENT Doctor plans on changing his plastic trach tube Tuesday evening. Then Jason and I will each change it once on Wednesday and Thursday. We need to become proficient at this because his trach will need to be changed every few weeks. We also need to learn how to suction and care for the trach as well as what to do in an emergency. If all that goes well, Ben could be coming home on Friday.
Ben will slowly be weaned off the TPN which is his current nutrition method and start being fed milk through his GI tube. They are hoping to start this in the next few days after his belly has had time to heal.We also need to learn how to care for and change the GI button.
An additional MRI and EEG are planned before his discharge, to determine what, if any, neurological damage has occurred as a result of his asphyxial episodes.
Today Benjamin was quite active. He has not required much pain medication. But he still needs his rest. He appreciates all his mail.
June 1, 2002
From Jason: Benjamin has had another great day as he approaches his first month birthday.
He was disconnected from the ventilator this morning. The ENT doctor checked his trach and said it was healing nicely and scheduled his first change for Tuesday evening. Jenny and I will watch and learn this first time, then it will be up to us. He is still being given humid air through a long blue tube. This doesn't help him breath but does make the air he pulls through his trach more pleasant.
They have also determined that he is ready for food and have given him his first feedings through his G-Tube. He seems to be handling these well too. This is a little ahead of schedule. They are starting with small amounts that will increase as his stomach expands. We were told they are also decreasing the amount of TPN (the nutrients that they have been giving intravenously) to compensate for the increase of Milk he is getting.
The best news of today is how comfortable Ben has been all day, He hasn't required any pain medicine and he has been alert and active. He enjoyed some bedtime stories, and watched his mobile go round and round. He really, really, really, loves being held by Mom who was able to hold him twice today. Now that the tube is out of his mouth he can't decide whether to pull on his Humidity tube or the IV that is in his head. So he gives them equal time. We are very grateful that he is doing so well, and pray he will continue this way to enable his quick homecoming. (Still on schedule for Friday!!!)
He was disconnected from the ventilator this morning. The ENT doctor checked his trach and said it was healing nicely and scheduled his first change for Tuesday evening. Jenny and I will watch and learn this first time, then it will be up to us. He is still being given humid air through a long blue tube. This doesn't help him breath but does make the air he pulls through his trach more pleasant.
They have also determined that he is ready for food and have given him his first feedings through his G-Tube. He seems to be handling these well too. This is a little ahead of schedule. They are starting with small amounts that will increase as his stomach expands. We were told they are also decreasing the amount of TPN (the nutrients that they have been giving intravenously) to compensate for the increase of Milk he is getting.
The best news of today is how comfortable Ben has been all day, He hasn't required any pain medicine and he has been alert and active. He enjoyed some bedtime stories, and watched his mobile go round and round. He really, really, really, loves being held by Mom who was able to hold him twice today. Now that the tube is out of his mouth he can't decide whether to pull on his Humidity tube or the IV that is in his head. So he gives them equal time. We are very grateful that he is doing so well, and pray he will continue this way to enable his quick homecoming. (Still on schedule for Friday!!!)
June 6, 2002
From Jenny: Ben continues to thrive and we are aiming for going home Friday! He is off the TPN, so no more IV in the head. He is being fed Mom's milk through the G-tube. He had an MRI on Wednesday. The cognitive part of the brain looks normal. He did have two "small bright spots" on the brain stem. A neurologist will explain what this means tomorrow morning.
Benjamin has jaundice now. Probably a side effect of the TPN and all his other stresses. He will have an ultrasound of the gall bladder and liver today to see what's going on. They put splints on his feet because they are turning in and they want to prevent problems later. We are also working on oral motor skills and sucking. Currently, Ben has no sucking reflex and very little swallow. His muscles are also quite stiff.
Mommy and Daddy are learning lots. Benjamin will be so much work when he comes home, that we will be getting home nursing help for some time. Ben will have an alarm monitor for his heart rate, a suction machine and humidifier for his trach, and an oxygen tank and ambu bag for emergencies. He will also be visited by therapists.
Because of the trach, there are many things Ben will have to avoid. These include pet hair, dust, water (in the trach), cold air, chalk dust, colds and viruses, and sand. He will not be a very mobile baby for some time. Therefore, we will most likely be home bound for the better part of the next year.
Tonight Jason and I will be staying in a hospital room alone with Ben. This is so we can practice caring for Ben by ourselves with a safety net. If all goes well, and his tests show nothing more, we will bring him home tomorrow. We are so happy to see an end to the hospitalization. We are a bit nervous about bringing him home, but we are thrilled to have our family together soon.
I feel the website has served its purpose. We will probably not be adding more updates. Thank you to all who visited. We feel very connected to you all.
UPDATED MAY 26, 2009
Ben actually came home on June 10, 2002 after 40 days in the NICU. We had a night of trying it on our own in the hospital and his G-tube came out, so he needed a procedure to replace it with a Mickey button. We tried it out again the next night and brought him home on the 10th. I recall it was a stormy day and the power kept flickering off and on which kept interfering with his equipment. It seemed an eternity before the first nurse shift began. A very good friend came over to keep watch during those first overwhelming hours. The entire local EMS team came out in shifts to meet Ben over the next few days. They all crowded into his tiny room and made a map of his location inside the home. It turns out that Ben actually has a very rare form of muscular dystrophy called dystroglycanopathy. He was officially diagnosed at age 6 1/2. His trach was removed at age 3 and his G-tube at 4. He continues to overcome the challenges placed before him and is still the strong, strong, little man featured in this blog.
Benjamin has jaundice now. Probably a side effect of the TPN and all his other stresses. He will have an ultrasound of the gall bladder and liver today to see what's going on. They put splints on his feet because they are turning in and they want to prevent problems later. We are also working on oral motor skills and sucking. Currently, Ben has no sucking reflex and very little swallow. His muscles are also quite stiff.
Mommy and Daddy are learning lots. Benjamin will be so much work when he comes home, that we will be getting home nursing help for some time. Ben will have an alarm monitor for his heart rate, a suction machine and humidifier for his trach, and an oxygen tank and ambu bag for emergencies. He will also be visited by therapists.
Because of the trach, there are many things Ben will have to avoid. These include pet hair, dust, water (in the trach), cold air, chalk dust, colds and viruses, and sand. He will not be a very mobile baby for some time. Therefore, we will most likely be home bound for the better part of the next year.
Tonight Jason and I will be staying in a hospital room alone with Ben. This is so we can practice caring for Ben by ourselves with a safety net. If all goes well, and his tests show nothing more, we will bring him home tomorrow. We are so happy to see an end to the hospitalization. We are a bit nervous about bringing him home, but we are thrilled to have our family together soon.
I feel the website has served its purpose. We will probably not be adding more updates. Thank you to all who visited. We feel very connected to you all.
UPDATED MAY 26, 2009
Ben actually came home on June 10, 2002 after 40 days in the NICU. We had a night of trying it on our own in the hospital and his G-tube came out, so he needed a procedure to replace it with a Mickey button. We tried it out again the next night and brought him home on the 10th. I recall it was a stormy day and the power kept flickering off and on which kept interfering with his equipment. It seemed an eternity before the first nurse shift began. A very good friend came over to keep watch during those first overwhelming hours. The entire local EMS team came out in shifts to meet Ben over the next few days. They all crowded into his tiny room and made a map of his location inside the home. It turns out that Ben actually has a very rare form of muscular dystrophy called dystroglycanopathy. He was officially diagnosed at age 6 1/2. His trach was removed at age 3 and his G-tube at 4. He continues to overcome the challenges placed before him and is still the strong, strong, little man featured in this blog.
Guest Book
GRAMMY
Comments/Thoughts : HAPPY BIRTHDAY BENJI BABY!!!!!We are so thrilled that you are such a beautiful, thriving, one year old little boy...Keep up the good work! All my love to you, and Daddy and Mommy. Grammy
Jean S.
Comments/Thoughts : As Ben will soon have his 1st birthday we are thinking of him and he and his parents are in our prayers. GOD BLESS YOU ALL
Dori
Comments/Thoughts : So good to see you doing so well, Benjamin, rocking the baby and playing with the little fishies. Keep up the good work and love you so much. Gaaama
"Grammy"
Comments/Thoughts : Congratulations little family!! You have all been through so much, but now you can settle in and enjoy your life together...and I know it will be a wonderful one! I love you all... God Bless!
Dori
Comments/Thoughts : So glad you made it home and seem to be so comfortable there. Continue to grow big and strong, so Mommy and Daddy can relax and enjoy taking care of you. See you soon.
the H. family
Comments/Thoughts : May God's loving hands envelope each of you as you venture family life "on your own". We will continue to keep all of you in our thoughts and prayers. God Bless. C,K,B,B,K
Jim S and Kim K
Comments/Thoughts : Jason and Jenny, Just a little note to let you guys know we're thinking of you. Good news that Ben will be coming home. Our thoughts and prayers are still with you that Ben is bouncing around in no time at all. Keep in touch when you can, Jim and Kim
Priscilla P
Comments/Thoughts : jenny...i patiently await daily to read updates on Benjamin.....he has become so much of my prayer life lately..i am so glad you are bringing him home Friday...I know you will be busy...but when you get a chance email me your email address...I would like
Wally L
Comments/Thoughts : I've been instructed to no longer tell you I am Paw Paw. Instead, grandma is now Nona and I am Papa. Your parents, who are frequent travelers to Italy, will understand. Four days and counting, and you'll be out of the hospital. PaPa
Aunt Stephanie
Comments/Thoughts : Hang in there, little tough guy! Happy birthday - I can't wait to hold you! Love you 3!
Nicole
Comments/Thoughts : Hi Benjamin! Glad to hear you're doing so well!! I hope you get to go home with mom and dad very soon! Love - Nicole
Dori
Comments/Thoughts : Happy Birthday, Benjamin, you are one month old today. What a long month for you and your parents (and grandparents). Hopefully things will be easier now for you. Love you so much.
John & Josie
Comments/Thoughts : We love getting this wonderful news about your progress. Keep it up little guy - more hugs & kisses are coming your way. Love to all three of you!
Uncle Joe & Aunt Lisa
Comments/Thoughts : What wonderful news about Ben! What progress! We hope that you will get to come home soon. Thinking of you, Joe & Lisa
Sandra and Howard
Comments/Thoughts : Your latest report is great news. We'll look forward to more reports as he gets ready to go home. We continue to pray for Benjamin and for you all. Our church prays for you daily. Last night we were in a Catholic church and lit a candle for him. Mu
Shirley T
Comments/Thoughts : Jason, Jenny and Baby Ben: Thinking of you today and hope all went well!
Bobbi
Comments/Thoughts : Just checking in again - crossing my fingers,praying etc. Hang in there little guy-and Mommy and Daddy - But Mom and Dad you don't always have to be tough -have a good cry once in a while.Love Dino-Bobbi
Lisa and Dolph S
Comments/Thoughts : Cont.: Benjamin: Remember GOD is watching over you and your parents. You're in our prayers. Take care. From your buddies in Lawrence KS.
Lisa and Dolph S
Comments/Thoughts : Benjamin... Hang in there young man! Keep fighting. Don't ever give up.We look forward to meeting you and your parents. We will tell you a few stories about your grandfather Wally when you get to feeling better. Bring a tape recorder. GOD is watching over
Janet S
Comments/Thoughts : Ben's purpose in life is to let everyone know that it doesn't take a voice to love and to be loved. Ben brings the family bond closer together for mom, dad, and the rest of the family. Ben lets you know that it's unconditional love that makes the world a
Betty B
Comments/Thoughts : Benjamin May your guardian angel always hold your hand. Betty B.
Ron & Nancy K
Comments/Thoughts : We'll be praying Thursday that all goes well and that you'll be well and home with your Mommy and Daddy real soon.
John the Uncle
Comments/Thoughts : Hi gang, just a note to send our love and prayers from up north. Love you three. John
Aunt Stephanie & Cousin Harrison
Comments/Thoughts : Last night HD made a wish to God to make Baby Benjamin all better soon. We love you guys!
Kurt L
Comments/Thoughts : Our prayers and thoughts are with Benjamin and the two of you. Love Kurt, Hattie, Austin, Tori, Alec, and Harrison
Mimi
Comments/Thoughts : Hang in there little guy--we're all still praying for you and your family. We're sure things will soon be much better. Love you, Cutie!
Joyce C
Comments/Thoughts : We hope things are going better everyday. Best Wishes, Joyce & Virgil
Chuck B
Comments/Thoughts : I too have a grandson named Benjamin. He will be 5 on June 10th. Please know the B Family in FL is also sending prayers for your Benjamin - especially during his pending ordeal. Our thoughts are also with his parents and grandparents.
Aunt Gi
Comments/Thoughts : Hi Ben, The doctors are going to fix you right up and you'll be feeling better in no time. Hang in there cutie! Aunt Gi and Uncle Hugh
Wally Comments/Thoughts : You looked great yesterday when Paw Paw and Maw Maw visited you. Nice to see you stirring around trying to get that respirator out of your mouth. You won't need it much longer. Take it a day at a time.
Wendi T
Comments/Thoughts : Hi, I'm a friend of Stephanie's from the theater. I have been hearing about little Benjamin's progress from her but finally decided to check out his page today. My prayers and those of my church family are joined with yours to believe for whatever is best
Derrick R. G
Comments/Thoughts : Our thoughts and prayers are with you all.
Leslie Q
Comments/Thoughts : Benjamin, Jenny, and Jason -- Chris and I continue to keep you all in our thoughts and prayers! Love, Leslie
Shirin and Bud S
Comments/Thoughts : Dearest Jen and Jason - Just to let you know that you and Benjamin are in our thoughts and prayers. We wish him well and know that with God's grace you will have the strength and wisdom to see you through this tough time. Love you - Shirin
Carol S
Comments/Thoughts : Jason & Jenny & Benjamin, I just heard about you today. You will have many prayers for you from Marshalltown. Hang in there. God has plans for you that are good!
Bobbi
Comments/Thoughts : I just want you all to know how much I love you and am still praying for you. Hope this gets through. Love Dino-Bobbi
Ken H
Comments/Thoughts : Ben You are a special guy to have such a great mother. Cindy and I are both praying for you and look forward to your playing in our home sometime in the future when you visit Cape Girardeau. Jenny, our prayers are also with you. Ken and Cindy
Sheryl
Comments/Thoughts : Hi Benjamin! I am thinking and praying about you and your mom and dad a lot. You are on my church's prayer chain. How special you are! Keep on plugging little one..... Love, Sheryl :)
Karm
Comments/Thoughts : Hi, Have really been thinking and praying for the three of you. Can't wait to see your beautiful Benjamin. God has a plan for all of us and sometimes we don't understand but hang in there. Benjamin, I saw your Grammie today and she can't wait to get her h
"Grammy"
Comments/Thoughts : My Darling Benjamin, My very best to you and Mommy and Daddy. I hope and pray you will all go home together soon. I LOVE YOU!
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