Robert Kenneth Picklesimer

March 09, 2002

This is not an easy email to send, but we wanted to let you know Kenneth is no longer with us. He was unable to recover from the 108 temperature that he had Thursday. The high temperature was too much for his little body to handle, his elevated liver enzymes doubled Friday and were even higher Saturday morning. This caused his blood count and clotting factors to drop and they were giving him blood and platelets to try to get this under control, but they were having trouble keeping an IV in him. They took him to surgery Friday night to put in a central line, but it too went out soon after it was in. He had been through so much these past couple of days and had so much more to go through and without good IV access they couldn't do much. It was uncertain whether or not he had suffered any brain damage from the high temperature and it was uncertain to what other organs had been damaged. We decided this morning that he had been through enough and that we had been fortunate that God let us have him for this long, the doctors agreed. Kenneth is now in a better place where he doesn't have to suffer anymore and he has been cured of his syndrome.

We want to THANK everyone for all of your continued support and prayers throughout these past 17 months. It means so much to us that so many supported and prayed for us; you, your friends, their friends, your churches, their churches and more. Without you we don't know where we would have been.

May God bless you all.

The Picklesimers,
Robert, Becky and Kenneth

Arrangements:

Visitation:    Tuesday, March 12th and Wednesday, March 13th
                  3:00pm-5:00pm and 7:00pm-9:00pm

                  Ratterman Family Funeral Home, St. Matthews
                  3711 Lexington Road
                  Louisville, KY

Funeral:      Thursday, March 14th
                  12:00 noon

                  St. Margaret Mary Catholic Church
                  7813 Shelbyville Road
                  Louisville, KY

March 08, 2002

In our last email we said Kenneth was doing great. The doctors were even talking about sending Kenneth home next week, well that has changed. He had been having some minor spells that occurred when he would have a bowel movement, which would last about 20-30 minutes, but then he was over it and he was back to his playful self. Wednesday he had two big spells which were lasting about 1-1 1/2 hours and required sedation, so the pulmonologist scheduled a bedside bronc (a scope that shows video of the inside of the lungs) for Thursday morning at 8:00am to check the larger airways in Kenneth's lungs. Thursday morning at 6:00am Kenneth had another big spell which required sedation. Kenneth did well with the bronc (which took about 10-15 minutes) and it did show that he had narrowing of his lower left lobe (airway). So when Kenneth gets upset this narrowing gets even smaller and sometimes the airway is even blocked, thus making it very hard for him to breathe. Usually when Kenneth gets upset his heart rate and respiratory rate will increase and then go back down after he calms down or is sedated. After his spell before his bronc they didn't go down, his heartrate rose to the 230's and his respirations were in the mid to upper 80's, this lasted a couple of hours until the decision was made to put him back on the hospital ventilator. He immediately started to calm down, his respirations went down to the 40's and his heartrate started coming down. His temperature was up a little Thursday morning at 98.9, he usually runs about 97.5. By noon it was 102.7 and by 2:00pm it went to 108.0 (this is not a typo). Becky and I stuck him in his bathtub filled with cool water to help get his temperature down. After about 20 minutes it was down to 101.2, we took him out of the tub and laid him on a cooling blanket, by 3:00pm his temperature was down to 98.3. They ran several tests on him to see what was going on, but as before everything is coming back negative so far. However, his liver enzymes are very high like they were in October last year when he was sick on his 1st birthday. Like in October he is dehydrated and the medications are not getting washed out of his liver causing the elevated enzymes.

Please keep us in your thoughts and prayers, as you always do, maybe one day soon we can get him home.

The Picklesimers,
Robert, Becky and Kenneth

March 04, 2002

We have some great news to share with everyone. This past Wednesday, February 27th they started Kenneth on the home ventilator trials again. He was on it for 12 hours Wednesday and Thursday, and has been on it continuously since Friday at 8:00am (a little over 72 hours now). He is doing great! Still no news on when we will be going home, we still have to get everything set up for home (nursing care, equipment, supplies, therapies, etc...). We haven't heard anything yet from Texas on when in April we need to take Kenneth back for his expansions, but we hope to get him home first.

Kenneth will be 17 months tomorrow March 5th, he now weighs 20 pounds and 7 ounces. He is now waving bye-bye ( or hi ) and has started taking some food by mouth (baby food, cookies, crackers, suckers and fruit wheels). We are hoping this will improve once we get him home and he is able to watch us eat, so he will know it is okay to put food in your mouth.

Thank you all for your continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

February 14, 2002

Happy Valentines Day

A lot of things have happened since our last email. Tuesday, February 5th, they put Kenneth on his home vent for a about an hour, but he didn't tolerate it very well. They gave him a day break and on Thursday, they wanted to sneak up on him so they sedated him then put him on it, this
worked, when he woke up he didn't know he had be switched over and he was his normal self. He stayed on it for about 8 hours and did very well before they put him back on the hospital vent. Friday morning at 7:30am, they switched him over while he was asleep and when he woke up, again he didn't know he had been switched. He stayed on the home vent until Tuesday about 1:00pm. During the 4 1/2 day stretch he had about six bronchial spasms (a spasm in the airway that prevents air from getting into the lungs). Each episode required him to be sedated to get him calm and breathing normal again. We all wanted to keep him on the home vent since he was doing so well the majority of the time, but by Tuesday he had had enough. The pulmanologist came by to look at Kenneth during one of his episodes, he switched him back to the hospital vent and ordered a bronchial scope (they put a video camera down his airway to see what was going on) to
see if he had developed any scar tissue around his trach. He was taken to surgery yesterday to do the scope, so if they found the scar tissue they could go ahead and remove it via a laser. The scope revealed a large amount of scar tissue that was blocking his airway and it took over an
hour to laser it. He did very well during the procedure. This area in his airway will have to heal before we can try the home vent again.

He now weights 20 pounds and 1 ounce and he is 28 inches long.

Thank You all for you continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

February 03, 2002

Hello everyone! Kenneth is doing great! We haven't made much progress on the home ventilator since our last email. They were able to get a home ventilator and trial him on it for two hours on January 18th. He did very well. However, the ventilator didn't have a humidifier, so we had to wait until it arrived. Also the staff at the hospital had to be inserviced on the ventilator. By the time the representative for the company was able to get the humidifier and inservice the staff, it was Monday January 28th. The next day they were able to trial him on it for an hour, but he didn't do very well. They were going to trial him on it again Thursday, January 31st, but he had been irritable the night before, so we waited. Hopefully this week we can get back on track.

We finally updated Kenneth's web site with some new pictures, below is the link:

<http://www.picklesimers.com/pictures2.html>

Thank You all for your continued support and prayers. We will keep you posted on how things go with the home ventilator.

The Picklesimers
Robert, Becky and Kenneth

January 17, 2002

We have done it again, we have let too much time go by between updates.

Kenneth is doing great. He did have a spell on Christmas day around 4:00pm that required him to be sedated for a few days, but he quickly recovered. So we have decided we're not going to tell him about any major holidays or his birthday again for a while. It seems like he has a spell on these days (last Christmas, his birthday, Thanksgiving and again this Christmas). Other than that everything has been pretty routine. Last Monday, January 7th, they did changed his hospital ventilator mode to the mode his home ventilator will be set on. This will give him a chance to get use to the new mode before they trial him on it. They had hoped to have the home ventilator in and ready to trial him on it by now, but the one home vent they received didn't work properly and they sent it back. Hopefully by next week they can get one. Kenneth now weighs 19 pounds 9 ounces and is 27 3/8 inches long. He is still holding at 20 teeth, but most of the people we talk to that have kids or know someone with kids, close to Kenneth's age only have a few, between four and ten. Sometime this weekend we hope to add some new pictures to the web site.

Thank You all for your continued support and prayers. We hope everyone is having a good start to the New Year and may God bless you all.

The Picklesimers,
Robert Becky and Kenneth

December 24, 2001

Kenneth is doing great and is settling back into his routine at Kosair. It will probably be until after the first of the year before they start trying to get Kenneth on a home ventilator, but that will give him more time to heal from his surgery.

We would like to take this opportunity to wish you and your family Happy Holidays, may it be safe and filled with joy.

Click on the link below to see a special wish we have put together for you:

                 <http://www.picklesimers.com/holidays.html>

Thank You all for your continued support and prayers, we have been truly blessed by them.

The Picklesimers
Robert, Becky and Kenneth

December 19, 2001

Today is the day. Kosair's Air Ambulance will leave Louisville this morning around 8:00 am EDT to transport Kenneth back to Kosair Children's Hospital. The flight is approximately 3 1/2 to 4 hours one way, so we should be back in Louisville around 6:00 am EDT. He is really doing great ! We are so happy and thankful to finally have both sides done. Now our goal is to get him on a home ventilator and get him home for the first time. This process could take a couple of months, which isn't that long considering we have been doing this for 14 months now.

This morning another little boy whom is 7 months old, with Jeune Syndrome is getting his first titanium rib. He would pass for Kenneth's brother, it is amazing how much they look alike. There is also an another little boy whom is 18 months old that has been here for a couple of weeks that also has Jeune Syndrome, but is not scheduled to have the titanium rib surgery at this time. Everyone here has commented how rare it is to have three kids here with Jeune Syndrome at the same time, that is probably as rare as the syndrome itself.

Thank You all for your continued support and prayers, we have been truly blessed by them and we thank God for each of you everyday. Please say a prayer for our safe journey home and please include the other little boys and their families in your prayers.

The Picklesimers,
Robert, Becky and Kenneth

December 16, 2001

Kenneth is doing great. If everything goes well we will be on our way back to Kentucky on Wednesday, December 19th. He is back to himself entertaining everyone, smiling, blowing kisses and sticking out his tongue. They will have him weaned from his pain medicine (morphine) by Monday afternoon and he hasn't require any sedation for 24 hours.

Everyone here has been great and has taken great care of Kenneth and us. However, we do miss being at home and everyone there and hope to see you soon.

Thank You all for the support and prayers over the last two weeks and throughout Kenneth's hospitalization.

The Picklesimers,
Robert, Becky and Kenneth

December 13, 2001

Kenneth is doing fine, however he has a touch of pneumonia that is making his recovery slower. His puffiness/swelling is finally gone and he looks like himself again. He is still being sedated because when he wakes up he wants to move around and he starts bucking the ventilator and works himself into a tizzy. When he is awake he blows kisses and smiles, but you can tell he is in a haze from his pain medicine (morphine), which they have been slowly decreasing. We don't know yet when we will be coming home, but hopefully we should know something by this weekend, as his x-rays show that the pneumonia is getting better everyday.

We have had a few emails asking about how the expansion/adjustment procedure is done. They make about a 1 inch incision in his existing scar from the implant, unlock the rib and adjust it out, re-lock it then close the incision. It takes about 45 minutes per rib to adjust. His first adjustment will be in about 4 to 5 months.

The weather here has been cool and rainy, the temperature has been in the mid 50's to 60's during the day and in the low 40's at night. It got down to 30 the other night. It's like Kentucky weather.

Thank You all for your continued support and prayers. We will let you know when we are coming home as soon as possible.

The Picklesimers,
Robert, Becky and Kenneth

December 6, 2001

Kenneth is still doing fine, they have been keeping him sedated in order to control his pain and his breathing. This surgery basically gave Kenneth a matching pair of Titanium Ribs, as one of the nurses here said "He now has Twinkies!" (get it - Twins). The Titanium Rib is a bowed rod with hooks on both ends that are attached to the top and bottom ribs. The ribs in-between are then cut, front and back, and pulled outward and tied to the Titanium Rib. This expands the chest cavity allowing room for the ribs and lungs to grow. Now that both ribs have been implanted, Kenneth will require periodic adjustments to the Titanium Ribs to compensate for his growth, typically every 6 months or so. However his first adjustment may be within 4-5 months. They were going to adjust his right rib during surgery, but since it took a long time to get his IV's started they didn't want to keep him under anesthesia any longer than they had to. It will take about 12-13 months for Kenneth's lungs to growth into the space created by the Titanium Rib. They can already see lung growth on his right side and it has been only 4 months since his first implant.

Thank You all for your continued support and prayers over these past 14 months of Kenneth's hospitalization. It is hard to believe that is has been this long, but now that he has both of his implants we are another step closer to getting him home.

Kenneth's web site has been updated to include pictures of his new xrays. <http://www.picklesimers.com/xrays.html>

The Picklesimers,
Robert, Becky and Kenneth

December 5, 2001

Kenneth is doing fine, they are keeping him sedated and comfortable (medicated with morphine for pain). He is puffy/swollen from the surgery which will last for a few days, but will slowly go away. The first 3 days after surgery are usually the roughest and he has done well so far.

If anything changes we will let you know.

Thank You all for the extra support and prayers, it is very much appreciated.

The Picklesimers,
Robert, Becky and Kenneth

December 4, 2001

They moved Kenneth�s surgery time to 8:00am this morning. At 8:25am they rolled him to the Operating Room. He was awake as they rolled him down the hallways, he was taking it all in, looking around at things on the walls. As before they had a difficult time getting his IV lines in (Central Line and Arterial Line), it was about 10:30am when the nurse came out and told us that they were ready to start the implant procedure. The doctors mentioned to us yesterday that they may expand the right side if they had time to do it, but since the IV�s took so long they did want to keep him under any longer than necessary. At 11:50am the nurse came out and said that the doctors were closing and that everything went as planned and he was doing great. At 1:00 the doctors came out to show us the x-rays and said that Kenneth was on his way back to the unit and everything went well. The doctors said his chest is now as big as his belly.

Thank You to everyone for your continued support and prayers, we will send another update later this evening.

The Picklesimers,
Robert, Becky and Kenneth

December 2, 2001

Everyone made it to San Antonio safe and sound. Kenneth did much much better this trip, he tolerated the transport ventilator and the plane ride without a hitch. He slept all but the last 25 minutes of the flight and he woke up smiling, kissing and touching the inside of the plane. They quickly gave him some additional sedation to finish up the trip. He is scheduled for a battery of pre-operative tests in the morning, so he will have a busy day. Robert will be pulling the night-shift and Becky will be pulling the day-shift, except for surgery day we both will be on duty. Our next update will be after the surgery on Tuesday.

Thank You all so very much for your continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

November 30, 2001

San Antonio here we come !!!!

We will be leaving on Sunday, December 2nd via Kosair Children's Hospital Air Ambulance. Kenneth's surgery is scheduled for the afternoon of Tuesday, December 4th. The surgery is a four to six hour procedure, so I am not sure when we will be able to send an update, but as soon as we can we will. They will be implanting the Titanium Rib on his left side this trip. The recovery time is 2-3 weeks and we will keep you updated on his progress during this period. If everything goes as well as the first surgery we should be home around the 17th. We will try to update Kenneth's web site with pictures of his x-rays after surgery, hopefully by Thursday.

Thank You to everyone for your continued support and prayers, you all have helped get us to this point. Please say an extra prayer or two on Tuesday not only for Kenneth and us, but also for the doctor's, nurses and other caregivers.

The Picklesimers,
Robert, Becky and Kenneth

November 6, 2001

Things change quickly ! Shortly after I sent the last email, I got an email from San Antonio. They have moved up Kenneth's surgery date to December 4th, less than a month away. We will be leaving for San Antonio 2 to 3 days before hand for pre-operative tests. As we learn more we will let you know.

Thank You all for your continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

November 6, 2001

Kenneth is back to his playful self. During his recent illness he had some x-rays that showed some lung growth on his right side, the side the Titanium Rib was implanted. This was great news to hear after everything else that had went on that week. We also heard from Texas and Kenneth's second surgery is scheduled for January 9th, a little over two months away. It is hard to believe that is has been over three months since his first surgery. Since his second surgery is so close we are going to remain at Kosair Children's Hospital. We will work on getting him home after the second surgery, hopefully by early spring. He now weighs 18 pounds and 10 ounces, and he is 26 3/8 inches long.

We have finally updated Kenneth's Web Site to include some pictures from his first birthday, which was celebrated a little late, and also some pictures from halloween. Click on the link below and you will be taken to Kenneth's Web Site.

<http://www.picklesimers.com/robert_kenneth.html>

Thank you all for your continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

October 9, 2001

Kenneth was removed from isolation yesterday evening as his tests continue to be normal. The liver specialist doesn't think there was any damage to his liver, but they will keep a close eye on it. They still don't know exactly what triggered this event and as we mentioned previously they may
never know. He remains puffy from all of the fluids that they gave him to re-hydrate him, but this should go down in a few days. Normally they would give him some lasix to help remove the excess fluid, but this medicine really gives the kidneys a workout and they don't want put anymore stress on them at this time. We are headed in the right direction and it will take a few more days for Kenneth to get back to normal. Now to let you know what has happened since our last regular update. Kenneth has been trialing a new home ventilator and has done pretty well. His first trial was on September 28th and he was on it for 2 hours. The first hour and 15 minutes went well, but during the last 45 minutes he was pretty restless. This was a great improvement from his previous trials in December and July where he was on a different home ventilator for about 15 seconds each time. His next trial was October 1st, they placed him on the home ventilator about 2:00 in the afternoon and took him off the next day about 4:00 p.m., 26 hours. Overall he did pretty well, but he had some rough moments. His last trial was on October 3rd and he didn't do as well, he was on for only 20 minutes. With the events that began last Thursday it will probably be a while before we start trialing him on the home ventilator again.

Attached are two pictures that were taken October 2nd and it is hard to believe that he went from being this happy to the condition he was in over the last 5 days. You never know when things will change and they can change so quickly.

Thank You again for your continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

October 8, 2001

Kenneth is doing much better, the tests that were showing signs of liver failure have improved and they do not feel that it was failing after all. With his high temperature he became dehydrated and with the various medicines that they were giving him for his fever, the antibiotics, the sedation and his regular medication, the kidney specialist thinks he may have had a toxic reaction. Since his kidneys and liver were dry and unable to wash the medicine through his system, they were retained in his body longer. The liver specialist will be in Monday to examine him to determine if Kenneth suffered any liver damage though all of this. He is still in isolation awaiting further test results. They still don't know what caused all of this and they may never know. When we left him tonight he was getting back to normal, but under a small amount of sedation, blowing kisses, smiling and playing with his toys. We were planning a special birthday page on the Web Site, but with all of this happening this week it will be delayed, but we will let you know when it is ready.

Thank You for your continued support and prayers.

The Picklesimers,
Robert, Becky and Kenneth

October 7, 2001

Kenneth has been doing great since our last update, but the day before his birthday all of that changed. Everything started on Thursday, October 4th about 10:00am when he became very agitated and things have progressively gotten worst. They had to sedate him in order to keep him calm and out of respiratory distress. His temperature reached 103.5 degrees and his heart rate went as high as 245. They immediately started running tests looking for some type of infection, they did blood work, took throat cultures, stool cultures and urine cultures. The tests that have immediate results were coming back normal, however some of the tests take 24 to 48 hours to reveal results. They decide they were dealing with something viral, which is harder to determine the source. They went ahead and gave him some antibiotics to start fighting what ever was attacking him. This went on through his birthday, Friday, October 5th. On Saturday evening some of the tests started pointing to his liver. Liver problems are one of the characteristics of Jeune Syndrome. They are not sure if he is having liver failure or if it is something they can treat with medication. A specialist is coming in Sunday to examine him. His stool test is showing signs that something is wrong, but it will take more time for the results to be apparent. Not really knowing what is going on with him they moved him into an isolation room. His temperature is back to normal and his heart rate is down.   This is all we know at this time, but will try to let you know more as we know more.

I know everyone prays for Kenneth and us, but we need some extra prayers to get us through this. Thank you for the love, support and prayers you are sending our way.

The Picklesimers,
Robert, Becky and Kenneth

September 11, 2001

Sorry for delay between updates, we will try to do better in the future.

Kenneth has been weaned from his narcotic pain medicine and they are now just giving him Tylenol. He is doing fine and is really getting back to his old self, playing and laughing. Occasionally he does have a fussy spell and they have to give him a little sedation, but after a few hours he is back to playing and laughing. The narcotic pain medicine cased him to be constipated and he had gone a few days without a bowel movement, but with a little milk-of-mag, which got things moving again, and with some adjustments to his ventilator to compensate for his growth, he was fine. We are not going to make it home before his first birthday (October 5th), but hopefully soon after. The pulmonologist wanted to give him a couple of weeks off of the pain medicine to make sure everything was okay before getting a home ventilator in. So hopefully we can get home before Thanksgiving. Kenneth weighs 17 pounds and 6 ounces and he is 26 1/4 inches long. His original birth weight was 6 pounds and 7 ounces and he was 19 1/2 inches long, so he has grown a little. As far as the second surgery it could be scheduled sometime between November and January, it all depends on how Kenneth is doing and when Texas is ready for us to return.

We updated Kenneth's WEB page on September 8 with some new pictures and if you have speakers turn them on. We have had several comments on the WEB page and we are glad everyone has enjoyed it. Feel free to share the WEB page link with those whom you have asked to pray for us.

     <http://www.geocities.com/robecken/robert_kenneth.html>

               or

     <http://www.picklesimers.com>

As always Thank You for your continued support and prayers during Kenneth's hospitalization, without you we don't know where we would be.

The Picklesimer's
Robert, Becky and Kenneth

August 19, 2001

Kenneth is doing fine they have been able to wean the frequency of his pain medication from every six hours to every twelve hours. They are going to work on decreasing the amount of medication this week until we are down to only giving him tylenol. Kenneth is getting back to his old self; smiling, playing and blowing kisses, but he does have an occasional fussy spell. Within the next couple of weeks the doctors are going to work on trying Kenneth on a home ventilator again. Hopefully this will be the one and we can work towards getting him home. Kenneth now has sixteen teeth, eight on the top and eight on the bottom, not all of them are completely in, but they have broken through his gums.

We have started a WEB page about Kenneth, it still under development, but you can take a look at it by clicking on the link below:

<http://www.geocities.com/robecken/Robert_Kenneth.html>

Thank You to everyone who continues to follow Kenneth's progress and continues to support and pray for us.

The Picklesimer's
Robert, Becky and Kenneth

August 14, 2001

We are back home in Louisville, Kentucky - we landed Monday, July 13 at 5:00pm EDT. Kenneth is doing fine, he did a lot better on this trip, but we had to hand-bag him the entire trip (4 hours - Becky and I rotated this task) as he did not tolerate the transport ventilator again. Kenneth is doing much better with his pain, the regular dose of medicine is doing a good job of controlling it. The last time we had to sedate him for pain was Friday. Kenneth is back at Kosair Children's Hospital were everyone was glad to see him and we were glad to see them. We will now work with the doctors at Kosair on getting him home before we return to San Antonio to get the other surgery, which will be in the next 3-5 months.

It feels good to be home, it felt like we were gone for 2 months instead of 2 weeks.

Thank You all for your continued support and prayers, especially during these last couple of weeks.

The Picklesimer's
Robert, Becky and Kenneth

August 9, 2001

The doctor following Kenneth and performed the Titanium Rib surgery is going to be out of town for the next few days, therefore we will not be going home until Monday, August 13. They are going to get everything in order so we can be ready to go once he gives the okay. If anything changes we will let you know.

Kenneth is doing fine, he is still having some pain, but that is expected with the surgery. Becky and I can't imagine the pain that his is going through, but having ten ribs cut and pulled outward has to hurt. As always he is taking everything in stride, however he lets you know when he is in pain.

Thank you for your continued support and prayers.

The Picklesimer's
Robert, Becky and Kenneth

August 8, 2001

Kenneth is doing fine, his swelling is down and he has been able to open his eyes all the way. His blood work from the other day has all come back normal, no signs of an infection. He has started smiling again, but not as big as usual. He is playing a little, but seems uninterested in doing so. Overall his is doing great after only a week and if he continues to do so, there is a possibility that we could be on our way back to Louisville as early as Friday, August 10th. We will let everyone know as soon as we know for sure. We will be going back to Kosair Children's Hospital (our second home) and start working on getting Kenneth on a home ventilator, so we can take him home (our true home). We would like to make it home before his one year birthday, October 5th. We know this is an aggressive goal considering October 5th is less than two months away, but it's something for us to shoot for.

Thank you for your continued support and prayers.

The Picklesimer's
Robert, Becky and Kenneth

August 5, 2001

Today is Sunday, August 5th, Kenneth's 10 month birthday.

They have started weaning him from the pain medicine, but are still keeping him somewhat sedated. His swelling has gone down quite a bit, but he still hasn't been able to open his eyes all the way, just enough to peek out. Yesterday he had a temperature of 102, so they did some blood work to make sure he doesn't have an infection and started him on antibiotics. Today his temperature is down within acceptable limits, 97-99 degrees. Overall they are saying that is doing very well postoperative and are very pleased with how things have been going and so are we. We still don't know how much longer will we be here, but maybe by the end of the week they may be able to give us some idea.

San Antonio has been very hot, mid 90's to 105 degrees, however the humidity is very low and it isn't that bad. They have been without rain for about a month, but they are excepting some this week from the tropical storm Barry.

Thank you for the continued support and prayers.

The Picklesimer's
Robert, Becky and Kenneth

August 3, 2001

Kenneth is still doing good. He remains swollen/puffy from surgery and they are keeping him sedated in order to control his pain. However, tomorrow they are going back-off on the sedation some to see how he does. They are pleased with his progress and told us that his x-rays look good. Attached is a picture of his x-ray before and after the surgery, you can really see the additional room that has been given to him on his right side. If you draw a line from the hooks at the top and bottom of the Titanium Rib, you can see it.

Thanks to everyone for your continued support and prayers.

The Picklesimer's
Robert, Becky and Kenneth

August 1, 2001

Kenneth is doing fine, they have been keeping him sedated since surgery in order to control his pain and his breathing. Like any surgery they are keeping a close eye on him. We wanted to let everyone know what the doctors did yesterday. The Titanium Rib was implanted on his right side and in three to five months they will implant another Titanium Rib on his left side. The Titanium Rib is a bowed rod with hooks on both ends that are attached to the top and bottom ribs. The ribs in-between are then cut, front and back, and pulled outward and tied to the Titanium Rib. This makes room to allow the ribs and lungs to grow. Once both sides have been implanted, Kenneth will require periodic adjustments to the ribs to compensate for his growth (every 6 months or so). It will take about 12-13 months for Kenneth's lungs to growth into the space created by the Titanium Rib. The first three days are the roughest according to the doctors, so
far Kenneth has pulled through as the little trooper he is.

Thanks to everyone for the emails, thoughts and prayers. We appreciate everything.

The Picklesimer's
Robert, Becky and Kenneth

August 1, 2001

Last night has turned into this morning.........

I (Robert) stayed with Kenneth last night and I am just now getting back to the hotel to get some sleep. Kenneth is doing fine, they are keeping him comfortable and making sure that he is not in any pain. Becky and granddaddy are with him now.

If anything changes we will let you know. I will send another update either later this evening or in the morning.

Thank You all for the extra support and prayers over the last few days, weeks and months, it is very appreciated by us all.

The Picklesimer's
Robert, Becky and Kenneth

July 31, 2001

They rolled Kenneth into surgery at 8:30 a.m. CDT; the nurse said she would come out and give us update in about an hour. At 9:40 a.m. CDT; she came out and told us that Kenneth doing fine, they were getting ready to start his IV's. At 11:00 a.m. CDT; she said Kenneth was still doing fine, but they had a hard time getting his IV's in for surgery. They needed two IV's, one in an artery and one to be used as a central line for medications, they said his arteries were small and they had to try several times to get them in. They were now positioning him for surgery, so it will still be a couple of hours from this point. At 12:10 p.m. CDT; she came out to let us know that Kenneth is doing fine and the procedure had started. Once Dr. Campbell completed the Titanium Rib Expansion he would be out to talk with us, while Dr. Smith closed. At 2:20 p.m. CDT; both Dr. Campbell and Dr. Smith came out to talk with us, the surgery was over and
Kenneth is doing fine. They showed us the x-rays taken after the surgery and he definitely has more room for his lungs to grow. We haven't had a chance to see him yet, but we should be able to in the next 30 minutes or so. We will send out an update later tonight.

Thank you all for your support and prayers, they have been answered.

The Picklesimer's
Robert, Becky and Kenneth

July 30, 2001

Kenneth's surgery is schedule for 8:00am CDT / 9:00am EDT on Tuesday, July 31, 2001. They will be running several tests on him Monday morning getting him prepared for the surgery. Once the surgery is over we will let everyone know how things went as soon as we can.

For those of you that may not know, Kenneth was transported to San Antonio, Sunday morning instead of Friday. He had a rough ride this time, even though he was sedated he didn't tolerate the transport ventilator very well. The flight is approximately 3 1/2 hours and it's about 15 minutes from the airport to the hospital. Once at the hospital they got him back on a regular ventilator and were able to get him settled in. Everyone here was glad to see us return for the surgery.

Thank You for your continued support and prayers.

The Picklesimer's
Robert, Becky and Kenneth

July 24, 2001

We are on our way to San Antonio, Texas again !!!!

We will be leaving on Friday, July 27th via Kosair Children's Hospital Air Ambulance. Kenneth's surgery is schedule for Tuesday, July 31st. The surgery is a six hour procedure, so I am not sure when I will be able to send an update, but as soon as I can I will. The recovery time is 3-4 weeks and we will keep you updated on his progress during this period.

Thank You to everyone for your continued support and prayers, you all have helped get us this far. Please say an extra prayer or two on Tuesday not only for Kenneth and us, but also for Kenneth's doctors, nurses and other caregivers.

Love
Robert, Becky and Kenneth

July 20, 2001

We have a tentative date of Tuesday, July 31 for Kenneth surgery, but we won't know for sure until Monday evening or Tuesday morning. If this date does not workout they do hope to get Kenneth on the surgery schedule sometime in August. Keep your fingers crossed and say an extra prayer that the July 31 date works out.

We will let you know as soon as we do.

Thank You.

Robert, Becky and Kenneth

July 5, 2001

The Titanium Rib Surgery for Kenneth has been approved !!!!!!!!!!!!!!

We received wonderful news today, which is Kenneth's 9 month birthday. Passport Health Plan (Kentucky Medicaid Insurance) has approved to pay for the Titanium Rib Surgery for Kenneth. We got Passport for Kenneth in November as a secondary insurance and it has paid off. We won't know until sometime next week when the surgery will be, but we are so excited to say the less. We want to THANK everyone for the extra prayers, which were answered today.

As we learn more we will let you know.

Love,
Robert, Becky and Kenneth

July 2, 2001

It has been three weeks since we returned from Texas and we have been denied twice. Our insurance received the evaluation summaries from the doctors in Texas and did an automatic review of the case, but still denied coverage due to the experimental / investigational status of the Titanium Rib surgery. We appealed to the benefits department, they reviewed the case, but also denied coverage due to the experimental / investigational status. We are going to consult with an attorney to see if there is a loop hole somewhere that we are missing. So the battle continues.

Otherwise Kenneth is doing good. He has an air leak around his trach and when he has his head turned a certain way he is able to make gooing sounds, which we enjoying hearing. Since he was intubated two days after birth and trached a month later, we haven't had the opportunity to hear him make many noises. He weighs 15 pounds and 8 ounces, he has eight teeth and has been
working on two more for a while, but they haven't broke through yet. He will be 9 months old on July 5th, it is hard to believe that he has been in the hospital for 9 months.

We will keep you updated as things change.

We want to THANK everyone for the continued support and prayers. It means so much to us that there are so many supporting and praying for us; you, your friends, their friends, your churches, their churches and more. With all of this support and prayers things will be fine, we need to have faith and trust that God will take care of us.

Love,
Robert, Becky and Kenneth

June 7, 2001

We have good news! The neurologist examined Kenneth today and said that there is not an immediate concern regarding the spinal defect, however it should be monitored every 6 months to a year to watch how the bone develops. One child that did have surgery to correct the defect is doing great, so if it does become a problem down the road there has been success in treating it. Now the bad news, we are coming home tomorrow, Friday, around noon. The battle now begins with the insurance to get approval for the Titanium Rib Surgery. We have talked with several parents this week that have gone through the same thing we are going through and were able to
get their insurance company to approve the surgery, so there is hope.

Thanks to everyone that have offered up extra support and prayers this week. Please pray for a safe journey home and we will continue to send updates as we know more.

Love
Robert, Becky and Kenneth

June 7, 2001

Still no news on the insurance situation, therefore the surgery for Thursday has been postponed. We received some bad news today from the MRI they did on Kenneth this week. The top bone on his spine that is at the base of his skull is putting pressure against his spinal cord when his neck
is flexed either forward of backwards. This has been a recent discovery of Jeune patients. They have recently started looking for this and so far 60% of them have this problem. They have requested that a neurologist look a Kenneth to get their opinion, but this problem must be corrected before they can do the Titanium Rib surgery. This is a very dangerous surgery, as is any surgery that is close to the spinal cord, but left untreated could cause paralysis and could even be fatal. Until the neurologist looks at Kenneth they do not know if Kenneth is old enough to have the surgery. So now we are not only dealing with insurance issues, but we are dealing with a new problem all together. Basically we don't know what will happen next. He could be sent home or we could stay here for a while longer, but it doesn't look like we are going to have the Titanium Rib surgery anytime soon. If we have any surgery it will be to correct the bone at the base of
his skull to relief the pressure being placed on his spinal cord. Otherwise Kenneth is taking everything in stride, he is still doing good.

Please continue to include us in your thoughts and prayers, and have faith, as we do, that God will make everything fine sooner or later.

We miss everyone.

Love
Robert, Becky and Kenneth

June 6, 2001

We made the trip from Louisville just fine. Kenneth did great on the plane ride down, he slept all but the last 40 minutes of the flight. They started running several tests once they had Kenneth admitted and settled in. We talked with the doctors and they have already determined that
Kenneth would benefit from the Titanium Rib surgery. They are going to talk again with the insurance company and recommend that they cover the cost of the Titanium Rib surgery. The other two surgeries the insurance company recommended are one time deals they don't adjust as the body grows as the Titanium Rib does. We should hear something Wednesday on the final
decision. If they do agree to cover the surgery the surgery is schedule for Thursday at 8:00 a.m., not Friday as we had been told.

We had a great visit with a six year old boy named Jordon whom has Jeunes, he had the Titanium Rib surgery when he was 21 months old. He is now off the ventilator, going to school, playing soccer and seems to be doing well. He and his parents were here having the rib adjusted to compensate for his growth. This was real encouraging for Becky and I.

Please continue to include us in your thoughts and prayers.

Love,
Robert, Becky and Kenneth

June 4, 2001

We leave for San Antonio in about six hours, between 8:30 and 9:00am.

Kenneth is doing good, he now has eight teeth and he is working on two more. He weighs 15 pounds 5 ounces and he is 24 inches long. He started smiling real big about two weeks ago, as you can see in the picture below. His Uncle Chris and Grandma Slater wanted Kenneth to fit in while in San Antonio, we think he will !

We ask that everyone continue to include us in your prayers. Friday, June 1st, about 4:30pm we found out that our insurance will not pay for the Titanium Rib surgery because it was considered experimental / investigation. However, they did agree to cover the cost of a two day evaluation and for the doctors to consider two other surgeries which they will cover and San Antonio performs. We are going to let the doctors there tell us what will be the best for Kenneth and let God handle it. Everything will be fine, if Kenneth was doing poorly we would be worried, but since he is doing well we have some time to get things figured out. Originally Kenneth was scheduled for surgery on Friday, June 8th, hopefully this will not change.

We will try to keep everyone updated via email as time permits.

Love,
Robert, Becky and Kenneth

May 10, 2001

We finally heard from Texas. We will be flying to San Antonio on June 4th and surgery has been scheduled for June 8th. An Air Ambulance from Kosair Children's Hospital will be transporting Kenneth to San Antonio. Becky and I will be able fly with him. The details after surgery will depend on how things go, but typically there is a two to three week recovery period. After the recovery period Kenneth will be transferred back to Kosair.

Kenneth continues to do well, he weighs 14 pounds 15 ounces, he has 7 teeth (3 on the bottom and 4 on the top) and he is blowing kisses....

Thanks to everyone for their continued support and prayers, it means so much to us.

Love,
Robert, Becky and Kenneth

May 3, 2001

Nothing is confirmed yet, but it looks like we could be taking Kenneth to San Antonio the week of May 14th, they have a surgery opening on May 21st. They are suppose to call back on Monday, May 7th and confirm the dates. I will let everyone know more on Monday.

Thanks to everyone for their continued support and prayers, it means so much to us.

Love,
Robert, Becky and Kenneth

March 27, 2001

Hello everyone, it is hard to believe it has been over a month since we sent our last update.

Kenneth is still doing great, he now weighs 14 pounds and 6 ounces, plus he has two bottom teeth. Can you believe he will be six months old on April 5th! He has become more active and continues to interact with us more everyday. He continues to receive physical therapy and occupational therapy (they are teaching him how to drive a truck). Actually occupational therapy teaches Kenneth how to play, by working with him on reaching for and grasping his toys. The doctors at Kosair will start doing some tests for the doctors in Texas next month in order for them to evaluate Kenneth. The tests will include x-rays, ultra sounds, breathing tests and a video of Kenneth breathing. As for the trip to Texas we are still waiting on specific date information, but they may want to evaluate the tests before they provide this specific information. As for now we are looking at the first part of May before we make the trip south. Either way as long as Kenneth is having good days it isn't that hard to wait, even though we would rather be in the comfort of our home. In case you have been wondering the name of the hospital in Texas is Christus Santa Rosa Children's Hospital in San Antonio, Texas. One of the respiratory specialists working at Kosair use to work there and he says it is a great hospital.

Please continue to keep us, the doctors and the nurses; plus all of the other families at Kosair in your thoughts and prayers. We do apologize for the delay in the update, but it doesn't seem like it has been that long since we sent the last one. We will do better on the next update.

Below are some more pictures of the little guy��

Love,
Robert, Becky and Kenneth

February 16, 2001

Kenneth has been doing great since our last update. He has been very stable and has not required sedation since February 1st and then he was given it as a precaution. He has been very alert and playful, which has really made mom and dad feel good. Nothing has changed on the trip to Texas, we are still looking at April or May, once he is seven months old. He has finally made into the weight range of 13 to 19 pounds, he weighs 13 pounds 2 ounces. He received his four month immunizations this week and has handled them without any reactions, which is great. Please continue to include Kenneth and us in your thoughts and prayers, as you can see they are being heard and answered.

If anything changes or if we have more details about the Texas trip we will be sure to let you know.

Below are three more pictures of the little guy.

Love,
Robert, Becky and Kenneth

January 28, 2001

Since our last email it has been like a roller coaster ride. Kenneth would have a stretch of good days then a stretch of bad days. Last Sunday and Monday he bottomed out, at first we thought is was getting too fat, in a way he was. We were weighing him weekly, on Monday January 15th he weighed 5.45 (12 pounds). On Sunday January 21st he weighed 5.885 Kilos (13 pounds). Normally a baby gains about a pound a month, however Kenneth had gained a pound in a week. His cheeks and eyes were puffy, he wasn't very active, and he was having a hard time breathing, which required him to be sedated. The doctors ordered lasix for him, a medicine that helps the body get rid of retained fluid. After his first dose Kenneth was filling his diapers quite frequently and they were full. After two days Kenneth started looking better and was breathing easier. At this point he had gotten rid of about a half of a liter of fluid off of his body. We started weighing him on a daily basis again and by Thursday he had dropped to 5.415 Kilos (11 pounds 14 ounces). So basically he got rid of a pound of fluid from his body. He has been doing a lot better, his cheeks and eyes are back to normal and he is moving and smiling again. As of last night he weighed 5.45 Kilos (12 pounds). On Friday, the doctors here talked to the doctors in Texas again and we think we now have a plan. They want to wait until Kenneth is a least 7 months old, because they have not performed the Titanium Rib Surgery on a baby any younger than this. This is fine because we don't want Kenneth to be the first. He has to weigh between 6-9 Kilos (13-19 pounds), which we don't think will be a problem. Texas has asked the doctors here to perform a few tests for them, so they can evaluate him prior to the surgery. Once Kenneth is 7 months old, which will be May 5th, they will start making the arrangements to transport him to Texas. We also were told that both of us could ride in the Kosair plane with Kenneth. We will keep you posted as more occurs.

Thank you all again for your continued support and prayers. As we promised last time, below are some of Kenneth's Christmas pictures.

Love,
Robert, Becky and Kenneth

January 8, 2001

Hello friends and family,

Kenneth had another spell on December 26 that lasted through that weekend, but is doing a lot better now. We are not sure what caused the spell, but we think it had to do with a shot they gave him to ward off Respiratory Systems Viruses (RSV). When he got his 2 month immunization shots after Thanksgiving, he got very irritable and it took a few days for him to get over them. So we think the shot, plus a high level of theophylline (a chemical within the body that helps keep our airways open, normal range 10-18, he was at 28) made him even more irritable this time. A high level of theophylline is like drinking too much coffee for us. This caused him to cry for long periods, which made it hard for him to breathe and put him into respiratory distress. They had to sedated him for a couple of days, so he could rest and recover from this. With this the doctors called Texas and they recommended that we not take Kenneth home and wait until he is 6 to 7 kilos or 13-15 pounds and send him there to have the rib expansion surgery (Titanium Rib). So that is what we are doing, he now weighs 5.295 kilos or 11 pounds and 6 ounces, and he is now 21 3/4 inches long. It will probably take about a month and a half to get within the weight range, but that is okay. Becky and I had talked about him staying at Kosair until we could go to Texas the week before. We don't know all of the details about the Texas trip yet, but we are putting together a list of questions. We do know that Kosair will fly Kenneth and at least one of us there in their plane. As we know more we will let you know. Below are some more pictures that we would like to share with you. We do have some Christmas pictures that we will send once we get them back.

Please continue to include us in your thoughts and prayers. We have a long road ahead of us, but we know that God will be with us, giving us guidance and strength.

Love,
Robert, Becky and Kenneth

December 23, 2000

In our last update I mentioned that they changed the ventilator setting so Kenneth was breathing on his own. Well last weekend (12/16 & 12/17), he got tired of doing all the work on his own, so they had to change his settings on the ventilator back to where the ventilator is giving him a little help, 20 breaths per minute. He takes about 50 to 70 breaths per minute. Even with this the ventilator is only providing little support, he is still doing a lot on his own. They did find a home ventilator and tried switching him over Tuesday, 12/21, but he didn't like it. Home ventilators and hospital ventilators are different in the way they operate, even a little difference is big when you are breathing (i.e.. the length of breath from the ventilators could differ by 1 second). Next week they are going to use a monitor to see how Kenneth and the hospital ventilator are working together, so they can try readjusting the home ventilator and try it again the first week in January. Kenneth is now 10 pounds 1 ounce and 20 1/2 inches long.

We hope everyone has a safe and wonderful holiday season. Please continue to include us in your thoughts and prayers as we do you everyday.

Love,
Robert, Becky and Kenneth

December 6, 2000

Hope everyone had a wonderful Thanksgiving...........

Kenneth is doing well, he was 2 months old yesterday and now weighs 8 pounds 14 ounces. The doctors changed his ventilator settings this past Saturday, where he is now breathing on his own and the ventilator is only giving him pressure, no breaths, to prevent his lungs from collapsing. So far he is doing great with the new settings. Kenneth will need to be on a ventilator for a undetermined period. Knowing this they are in the process of locating a home ventilator, so we can bring him home soon, but not before Christmas. Kenneth is now feeding with a bottle, he is taking about half of his feedings this way and as you can tell by his weight and the picture below, he enjoys it.

We do appreciate everyone for all of your thoughts and prayers during this difficult time. Knowing that we have you really gives us great strength. We do ask that you continue to included us in your thoughts and prayers, as we do you everyday.

Love,
Robert, Becky and Kenneth

November 22, 2000

We are very thankful this Thanksgiving for friends and family like you, whom have supported and prayed for us over the last seven weeks. We are truly thankful for all of the calls, emails, meals, cards, letters, the offers to do things, thoughts and prayers. We pray everyday for you and your family, thanking God for you, asking God to answer the many prayers that you are sending up to heaven, and to keep you and your family safe. Everyday we see answers to the many prayers we are receiving, Kenneth continues to gain weight, he is up to 8 pounds 2 ounces, he is alert and continues to do well. We don't expect Kenneth to be cured overnight, but we are thankful for the miracles we see in him everyday.

To you and your family, have a safe and happy THANKSGIVING...............

Love,
The Picklesimer's
Robert, Becky and Kenneth

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How great is the love the Father has bestowed on us, that we should be called children of God.
1 John 3:1

November 14, 2000

Kenneth had tracheostomy surgery Monday, November 6th, and everything went great. We can now see his precious face and we wanted to share it with you, see the three pictures below. Our goal now is to work on getting him home, which could be two to three months away, at the least. He will probably come home on a ventilator, which we have learned is not an uncommon event. He is definitely growing, he now weighs 7 pounds and 6 ounces, only one ounce short of being one pound over his birth weight.

No updates on going to Texas, this is still 5-6 months down the road and we are focusing on the next couples months.

Again we want to thank everyone who has continued to include us in their thoughts and prayers, knowing that we have this support is a wonderful feeling and gets us through each day.

Love,
Robert, Becky and Kenneth

November 2, 2000

Kenneth now weighs 6 pounds and 12 ounces, he had dropped from his birth weight of 6 pounds and 7 ounces to 5 pounds and 12 ounces, which is typical. He is still on the ventilator and still
doing good. The doctors changed his ventilator mode which now gives him less support than before and his has been doing pretty well on it. This is a step towards weaning him from the ventilator, but it is going to take time. Within the next two weeks they will be doing a tracheotomy on Kenneth, since it is going to take awhile to wean him. This will be better for him down the road, there is a lessor risk of damage to his vocal cords, plus is will allow for him to move around easier.

The doctors did send his charts and xrays to the doctors in Texas on Friday, so we are waiting to
hear back from them. We did find out that Kenneth would need to be 6 months old before the doctors in Texas would perform surgery. This gives the doctors time to see what the rib cage is going to do as he grows.

The process is going to be slow, so we asked that you continue to include us in your prayers and
thoughts. God works in mysterious ways, but at his own pace.

Love,
Robert, Becky and Kenneth

October 20, 2000

Kenneth is almost back to the ventilator settings that he was on before his spell this past weekend,
so things are looking up. The doctors from Kosair have made contact with some doctors in Texas that are experienced with thoracic disorders, including "Jeune Syndrome". These doctors are currently performing corrective surgery to expand the rib cage to allow room for the lungs to properly expand and grow. We are not to the point yet that surgery is the answer, but we are trying to gather information so we can be prepared if it does come to this. The doctors are sharing information on Kenneth with the doctors in Texas, so they can review his condition to help plan his care. We are still waiting to see if Kenneth can be weaned from the ventilator all together, which will take some more time to determine.

We dearly appreciate all of the prayers, cards, emails and phone calls. We know that many of you
have added Kenneth and us to your church's prayer list and hundreds, even thousands of prayers are going out for us daily. Having this support is helping us tremendously. We do ask that you
continue to include us in your prayers and thoughts, plus the doctors and nurses caring for
Kenneth. We also ask that you include all of the babies and families that are at Kosair. We have
met several families from across Kentucky and Indiana that are also going through a challenging
time in their life, when this is suppose to be a joyous time.

Love,
Robert, Becky and Kenneth

October 17, 2000

We have talked with the surgeons and they think the best course of action right now is to wait a
while to see if Kenneth can be weaned from the ventilator, verses doing surgery. If it is
determined that he will be ventilator dependent, surgery would then be considered. So we are in a
"Hurry Up and Wait" situation now, because it could take weeks or months for this to be
determined.

Kenneth is doing fine today, however he had a rough weekend. His carbon dioxide level went up
Saturday evening and it took them until Sunday evening to get it back within acceptable levels.
This morning he was back to the ventilator settings that he was on before his spell Saturday
evening. All we can do is hope and pray that these spells are as rare as his condition.

Please continue to include Kenneth and us in your thoughts and prayers.

Love,
Robert, Becky and Kenneth

October 13, 2000

First of all we want to thank everyone for their thoughts and prayers, we really do appreciate the
emails, cards and phone calls. Please forgive us for not getting a direct response back to
everyone, but we are at the hospital the biggest part of the time and we are staying there as long
as we can. The time we are at home involves sleeping and getting ready to return to the
hospital.

Ken is still at Kosair's Children Hospital. He is on a ventilator to help keep his lungs from
collapsing, but for the most part he is breathing on his own with a low percentage of oxygen. At
times he does gets fussy (changing his diaper or giving him a bath) and they have to turn the
oxygen percentage up, but only until he calms down. There is a group of surgeons that are
meeting Friday, on Ken, to try to determine the best course of action for him. We are not sure if
we will get to meet with them later in the day or if we will meet with them on Monday. As soon as we know more we will be sure to let you know.

Please keep up the thoughts and prayers, because God's will is what will prevail.

Love,
Robert, Becky and Ken

October 8, 2000

On Thursday, October 5, 2000, Robert Kenneth Picklesimer was born at 05:48am, he weighed 6
pounds and 7 ounces, measured 19 1/2 inches. Mom has been released from the hospital, however Ken is still in the hospital. He has a very rare disorder called "Jeune Syndrome", which is a skeletal disorder that effects the growth of his rib cage, which limits the growth of his lungs.
He was transferred to Kosair's Children Hospital, Saturday morning. There is little information
about this disorder due to its rarity, but from the information we have been given, the small
chest is the only symptom that is apparent.

Please include Ken and us in your thoughts and prayers. We will let you know how things are
going a little later.

Love,
Robert, Becky and Ken

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