Arran is doing well. He is sitting on his own if we put him a sitting position. He still can't get himself there on his own but he can hold his position. His current favorite toy is his little sister's pacifier. He likes to steal it from her and hide it. He never puts it in his mouth. He is so sneaky but he is totally lovable. He had pink eye once this month (as did the other two as well). But other than that he is doing great. He was supposed to see his orthopedic surgeon this month but becasue of the pink eye we rescheduled for April and he'll see his regular surgeon then too since they have clinic the same day.

Arran is great. No illnesses this month and he is getting stronger. Mommy is still working and he is spening his days with his big brother who is homeschooled and his little sister at his Gram's house. He gets all of his services at home. He sees PT, OT, and his special Ed teacher. He is making progress. Sometimes it seems painfully slow but we are still going in the right direction. Some days I have to look back at where he was when we started so I can keep in perspective how far he's come. Its sometimes difficult to see how fast Kathryn is changing and how slowly Arran is. But on the other hand Arran is a far better snuggler than Kathryn is.

Arran is wonderful. He is getting ready for his birthday next month. Health wise all is well. He is still continuing to get stronger. We're working on getting some strength in his little stickly legs. He can support his weight with assistance. He's still wearing his DAFO's and his shoes at night. He can "army crawl" when he wants to. Most times though he'd just perfer to roll.

Arran turned 4 years old today! He is amazing. Today for the first time ever he decided to sit up on his own. He pulled himself right up into a sitting position. I was so stunned. When Brad came home I told Arran "Show Daddy your new trick" and he did it again. He sits up so smoothly you'd think he had been doing it for weeks. He was so proud of himself. He's such a character.

I'm not sure what "inspired" me to do this but I called Linda today right after school before I left. She told me that Arran had been crying and whining all day long. I called the doctors and asked to be seen. I'm sure that they thought I was crazy when I called in and said that Arran needs to be seen because he is being whinny but oh well he's not like that unless there is something wrong. His appointment was scheduled for 6:30pm. I went home to get Patrick's karate uniform and then out to Linda's. At about 5:30 PM I was holding Arran on my lap and he had a seizure. As soon as he started the seizure his fever came on. Once his breathing returned to normal Major helped me take him into the doctors office. She sent us directly to the ER. We had an outstanding nurse who took care of us at the ER. She had actually had him one other time when his button had fallen out and the hole closed too much for us to get it in. She had him on an IV in one stick (which for Arran is incredible) and she took blood before she started the IV so he only had one stick! He had chest x-rays and lots of medicine to bring his fever down. The doctors think that it is a virus in his upper lung and so they've given us a nebulizer to bring him home on and he will get breathing treatments every four hours. We were finally released at 11:30 PM. We have an appointment tomorrow morning with the doctor.

We went to the doctors today and he said that it sounds like the ER doctor diagnosed him correctly. They think its a virus becasue all of the bacterial cultures turned up negative but there is definitely some wheezing sounds coming from his chest. We are to continue with the every four hour breathing treatments.He's so pitiful. I hate to see him sick. He was so good monday night and now he's like a totally different kid.

We had a long night with Arran. He's miserable and the breathing treatments annoy him but they seem to be helping. Brad is home today because I have an ultrasound this morning. We will find out the sex of baby number 4. When we got back from the ultrasound Arran wasn't doing well. He was breathing incredibly fast and shallow. I called the doctor's office and they said to bring him right in. So Brad and I went in. Once there the doctor checked him out and then called in another doctor to listen to his chest. By then Arran was really having difficulties. They brought in an oxygen tank and gave him a mask and we gave him 3 breathing treatments in the office. The doctor called 911 and we were told we were going to the ER once again. The hospital is less than 0.1 of a mile from the doctor's office but they wanted him on oxygen the whole time. His lips were starting to turn blue. I rode in the ambulance with him up the hill to the hospital and convinced the ambulance person to not try and start an IV. He looked at his veins and agreed since we had such a short distance to go. When we got to the ER the guy just carried him in. He looked so small and fragile. As we were walking in the nurse who had him last time yelled that "I know this baby, I'll take him" and we were once again blessed by someone with a little history on him. She was once again able to start the IV and take blood with only one stick. This was not a nice trip. We had 4 doctors all talking at once and 3 respiratory therapists all trying to decide what to do. I was trying to get them names and numbers of specialists and the University of Maryland that they could talk to. It was very scary. Finally it was decided that the ENT doc and the Anesthesiologists would both go into surgery and try to place an intubation tube. The ENT doctor warned us though that because Arran's airway is so tiny that there was a very strong chance that they would have to do a trach. They wheeled him upstairs to the OR. He was so pale and so tired that I was afraid he would stop breathing before they got him there. We went into the OR waiting room where I think I cried for a half an hour.After about 45 minutes to an hour the nurse from the ER came and told us that they were able to place the tube and that the did not need to do a trach. She said that they were getting him stabilized and then they would send him to the recovery room and from there they would fly him down to University of MD. My parents arrived shortly there after. We were able to see him and he looked like he was asleep with tubes and wires running everywhere. If he had not been a NICU baby it would have been truly terrifying to see but I'd seen him like this before so I was able to stay calm. My parents saw him and then left for Baltimore in the hopes of getting there when he did. We live an hour and a half away but the helicopter can get there in 25 minutes. We were told that another patient was also being flown out so we got to sit in the recovery room with Arran for about an hour before they were even there to get us. His transport nurse was wonderful. She got him all settled and bundled up for his first flight. It was horribly sad to see him take off and head down the road without us. Patrick who was at Linda's house with Kathryn was able to watch the helicopter fly overhead.We went home to get some things and then we started down the road. Mom and dad called and said that they had stepped out of the elevator and were trying to decide where to go when the other elevator doors opened and Arran was being wheeled out. So they were with him the whole time. We made excellent time getting to Baltimore. I'm so thankful that there was little traffic and no accidents. We met with his doctors and nurses and began the waiting processes.

They gave Arran medicine to paralyze him because under regular sedation he kept wiggling. They do not want this tube to come out until they are sure that he will be able to breath on his own. He just looks so sad though.They have decided not to take the tube out until they can be sure that whatever caused his breathing condition is resolved. At this point they think it may have been a virus but the viral results haven't come back yet. Another possibility that they are thinking of could be acute onset asthma. Arran has never shown any asthma symptoms previously though so we're not sold on that one. His grandparents have all filtered through at some point during this ordeal. Brad and I are tired but hanging in there.

There has been no real change in Arran's condition. The respitory therapist said that he can hear leaking around the tube. This is a good thing in that the swelling has come down somewhat in his airway. He has had more xrays than anyone I know ut they are all coming up negative. There is no massive infection in his lungs so they don't know what is causing all of this. They were able to lower his oxygen levels a little today so that was good. Brad and I are going home tonight to spend the night with the other kids. We are going to sunrise service tomorrow morning and then we're coming back down. I remeber doing this when he was in the NICU and its still no fun.

The doctors have decided that they will try to remove his tube tomorrow. My parents are coming down to spend the night. We've got a room at a hotel near the hospital and we are all going to sleep there and we'll go over to the hospital by 6 am. We don't know what time that they will bring him out and pul the tube but we want to be there as soon as he wakes up.

We arrived at the hospital with Arran at 5:45 am. He didn't go down to the surgicenter until 11:30 am. I went down with him and Brad and my parents stayed up in the PICU. When we got down there all of his doctors came in and talked with me. He had the head of pediatric ENT and two pediatric anthestisologists working on him. He has had both of the anesthisologists before and they both remembered him. Hie recovery nurse Rob he has had before too and he knew him. I felt very comfortable with the people working on him. Brad and my parents came down to join me in the surgicenter waiting room. We've spent way too much time there. He was in the OR for about 45 minutes and then they brought him into recovery. He was grumpy and sore and gernally miserable but he was breathing on his own. They had an oxygen mask on him at 100% oxygen. Rob gave him some pain medicine because he thought that his throat might be sore from the tube. I agreed and Arran seemed to settle a little after a bit. He was still uncomfortable and whinny but that was to be expected. I got to travel bedside with him once agian on his trip back upstairs to the PICU. When we got up there all of the doctors convened around his bed and talked. The anesthiologist ran the show. Later that day Arran needed to have a new IV placed. Luckily that was relatively painless.He slept on and off the rest of the day and Brad and I took shifts throughtout the night being bedside.

Arran is still very weak and tired. They are planning on starting giving him food today but we have no idea when. Things are happening really slowly. They are also trying to back his oxygen percentage down. He was down to 70% today but then his pulse ox dropped and we had to bump it back up. We are trying to explain to the doctors that his pulse ox is rarely ever over 95% and is usually constent at 90%. So far they aren't believing us. This is frustrating.Right now we are playing a waiting game.

We are exausted. Brad has been going to bed at 10 pm and then coming in to sit with Arran at about 4 or 5 am and then I go sleep unit 7:30 - 8 am. Then we try to nap some too during the day. Arran is still not well but is still breathing on his own and he is now getting all of his food thorugh his g-tube via the pump and no bolus feeds. We ran into his kidney doctor today and she is keeping up on him. She wants us to get some blood work before we leave to double check his kidney function. This afternoon Arran is starting to shine. Hie viral reports all came back negative and they have decided that he is no longer contagious. (Duh!) He has a PT and an OT that came to visit him today and he tried to play. He can't sit on his own anymore and he has really weak muscle tone. Its sad because he had been doing so much just over a week ago but he is still here and that is good. He smiled today and they were able to drop his oxygen level to 50 %.

I just thouht that I'd add this. His nighttime nurse and I were giving him a bath and we took his oxygen mask off completely and she said that we can leave it off as long as his numbers stay within range. AND a doctor finally listened and increased his range so now instead of ahing to be above 95% he only has to stay above 89%. His monitor didn't go off once during my watch.

Rumor has it that we are going home today. Arran has a male nurse today named Aaron. We are taking this as a good sign. The doctor would be more comfortable keeping him another 24 hours but we are confident that he is better. He is smiling more now and trying to play with his piano. He is no longer on oxygen or an IV but he has two heplocks in still. At noon they finally decided that he is going home today. He had to get stuck agian for his kidney blood work because both heplocks refused to bleed. But by 3:00 pm we were released. It was so nice to come home and shower. Both kids missed us and Patrick was worried about Arran. He is still very tired but he's doing well. We have a Dr.s appointment tomorrow.

Arran went in to see his doctor as a followup. He cired when went into the office and really did not want to have any part of a doctor whom he normally loves. It was sad but understandable. He is done with medical personel for a while. They say that he looks good. He has his yearly check up on April 21st so they do blood work then and double check on him then.

Arran and Patrick had their yearly check ups. Arran got a clean bill of health. He still can't sit up and is very weak but he is healthy and breathing well. We have no idea what caused his illness and we don't think that we will ever know.We are just thankful that he is better. We have taken his health for granted for so long becuase he has been so healthy. We thank god that we have our little boy still. Looking back I now realize how close we were to losing him that day in the doctor's office. We are so thankful to all the people who helped him and who prayed for us.

Not a lot is happening this month. But Arran sat up on his own again today! We are so excited. He has bounced back from illness nearly completely now. It amazes me how much he changes over such a little time period. We've also changed his feeding pattern a little. He now gets 60 ml at every feed and he seems to be tolerating this much better and his night time feeds have been upped a little to compensate. Things are good!

Arran went to the beach June 21st - 24th. He had a great time although he doesn't like the cold water and he doesn't like the sand. His health is great right now and he has two check ups tomorrow June 25th. He is currently able to sit up right on his own and pull himself up into a sitting positon all by himself. Of our three children we've voted him the most rotten because he is more than likely the sneakiest. His a complete charmer though so you can't be angry with him. He spent the enitre 4 hour car ride to the ocean picking on both his older brother and younger sister by stealing their things while they weren't paying attention.

Arran met with his orthopedic surgeon today as well as his urologist/general surgeon. He no longer has to wear his Dennis Brown Bar to sleep in because his clubfeet are almost overcorrected. He has also grown so he needs new DAFOs to help support his little ankles. But he recieved a clean bill of health from his ortho. His surgeon said goodbye to us today because (knock on wood) we won't need his services anymore. His last surgery was to lower his left testicle the rest of the way down was a success and it was were he left it and still in one piece. It is way too early to tell if it is functional but it is still alive which is good. It is with mixed emotions that we say goodbye to this doctor becuase he really was one of our favorites and he would do anything he could to help Arran. He said that he wouldn't offically write him off the charts in case we would ever need to return due to his Nissen malfunctioning or any other wierdness that Arran might develop.Both doctors informed Arran that he needs to now learn how to walk so we will see how that goes. They also mentioned seeing a new pediatric oral/facial doctor who could give Arran a look over and perhaps see if he was in need in anything in that department. Right now it looks like the only major surgery that we can forsee is his "nose job". Last time we spoke to an ENT though they weren't interested in working on him until he was the size of an average 5-6 year old. We have a good ways to go yet. Hopefully Arran won't create any new issues for us and we can have a quiet summer until Andrew is born.

Arran went to the doctors today for a weight check. We discovered that he has lost weight so it is time to increase his pediasure intake. He was currently recieving 1000 ml and the doctor wants to up him to 1200 ml over a 24 hour period. Most of this he gets at night on a feeding pump but some of it he gets during the day. We're increasing him slowly becasue we all know that Arran hates change. He seems to be doing ok so far. We've had a few nights of no sleep becuase his little sister is sick and when she wakes up crying Arran starts. He has always been our sympathetic crier the problem is he cries longer and louder than any other person on earth. So it is frustrating trying to calm everyone down enough to go back to sleep. Luckily Kathryn seems as if she's getting better so hopefully this was only a tooth coming in.

So really all of this took place on July 3rd but when I went to bed it was July 2nd. I woke up in the middle of the night aroun 1:00 am. Arran was making noises so I of course woke Brad up and asked him to go check on him. When he went in he turned him off of his pump and brought him out to the living room because Arran was having a seizure. We called 911 after 5 minutes because previously his siezures have only lasted up to 2 minutes. They were here within 5 minutes. As far as we know the seizure lasted 15 minutes. We have no idea how long it was going on before I heard him. During all of this his color and breathing remained good. We went to the ER and were released at 4:00 am. We have a doctors followup this morning so I'll update everyone on that as soon as we get home.

We just came back from the doctors and Arran has a clean bill of health. They are blaming this seizure on a fever but they have no idea what to blame the fever on. So we just are going to keep an eye on him and see what happens. He is back to his active little self with no signs of illness. Strange.

Arran woke up this mornng to pink eye. This poor little guy is just now begining to act sick. I hope we don't have a seizure everytime we start to get sick. Mommy is also now sick so we are not having a good weekend. Keep us in your prayers.

The pink eye seems to be clearing up. He is still a little sluggish but he's getting back to his old self. He is a drooling fool right now. He soaks through his T shirts. Kathryn is the same way right now so it must be part of this virus. Mommy is still sick too. No more fevers, yeah!

After getting pink eye in both eyes it looks like he's finally beat it. He is all smiles once again and is getting himself into all sorts of trouble. His new favorite game is to sneak up on people and grab their toes. I have no idea where he picks these games up but its pretty funny to watch as long as your toes aren't the ones in quesiton.

Arran went to the doctor's office yesterday for a weight check and he weighed 28 lbs and 11 1/2 ounces. This is the most that we think he has ever weighed. We are excited. His health is good right now and he's getting stronger. We talked about a siezure plan of action and figured out what might work best for us. Of course this all depends on his activity during the siezure and how he is coping. I feel better though having a plan. We agreed that his current level of food (pediasure) intake was enough. He gets 5 cans in a 24 hour period. He'll go back in again for another weight check in October. He has an appointment in Baltimore with his nephrologist on August 15th. He was fitted for new DAFO's (little braces for his feet) last friday and they will call us when they are ready. His calander is pretty calm right now as we wait these next few weeks for little Andrew's big arrival.

Arran had to back to the doctors last week to get some blood work done. He was not a happy camper but managed. He will see his kidney doctor this week as well as get his new DAFO's. DAFO's are a special type of brace that he wears on his legs to help support his little legs while we work on standing. He's having a nice summer. He enjoys being home with Mommy and Patrick and Kathryn. He's also decided that he is too big to take a morning nap. Now he only naps in the afternoon.

Arran went to Baltimore today to get his new AFO's and see his nephrologist. All went well. The kidney dr. wants him to have some more blood work done within the next week. She also wants him to have an ultrasound of his kidney's in 3 months. We had an interesting discussion about kids with his syndrome and their average height. She was concerned that children with kidney issues don't usually acheive tall heights plus she was wondering if kids with his syndrome ever got tall. We did some research last night and found a link off of the www.4p-supportgroup.org website that showed some average heights and he seems to be on par. We sent her the info and we'll talk about it again when we go back down in 3 months. Arran seemed to be uncomfortable with his button so we changed it this evening. It looks infected so we'll call his pediatrician in the morning.

I'm definetly thinking the g-tube sight is infected. We have an appointment for later this morning. They may draw blood or not, we'll have to wait and see. He is uncomfortable and it is red and swollen. One more thing to do today!!! Hopefully this will be a quick appointment and a little anitbiotic will take care of the problem.

Ok so we're going back down to Baltimore so Arran can be seen in the Pediatric ER. They want to do a G-tube study to make sure that the tube is draining into the right spot. Today has been stressful to say the least. My great grandmother died last night and now we are off and running to Baltimore once again. They couldn't draw blood today in the doctor's office either because they didn't have the right tubes so we're going in there on tuesday as long as I'm not in labor!!

We went to Baltimore. We spent 6 hours in the pediatric ER to have a surgeon replace his g-peg with an adjustable g-tube. It took him 10 minutes because he was showing a resident how to do it. I could have done it in less than 5. They want to see us in the office on Monday (in Baltimore). I don't think so. I have a funeral that day and we have doctors appointments on tuesday. I'm not riding an hour and a half one way to go back anytime soon. The surgeon did give us a prescription for an antibiotic "just in case" so he's on that for a few days. The site is sore still but behaviorally he is his normal happy self.

Arran is going in for blood work today. We'll see how he does. He also has PT this afternoon. He is really snotty so I think that he picked up some sort of virus at the doctors, hospital, or ER. His activity level hasn't changed any its just he's so gross. I think we've gone through several boxes of tissues now. I'll write more later if anything happens at the doctors today.

In case you missed the big news, Arran is a big brother once again. Andrew was born August 30th. Arran is adjusting to him. He doesn't get too upset if Andrew is crying like he does if Kathryn or Patrick are crying. He likes to sit next to him and will sometimes reach out and touch his head. Otherwise all he does is pull the blanket off of him. Arran didn't take a nap yesterday nor did he sleep much last night. In the middle of the night he started screaming crying and didn't stop for about two hours. I gave him some Tylenol and rocked him. This morning he got a second dose of Tylenol and he slept for about 2 hours. I just put him down for his afternoon nap so we'll see if he sleeps now. He doesn't seem sick in anyway. I'm not sure what this is all about but I'm sleep deprived!