Today we visited the Growth and Nutrition Specialists at UMMS and had Arran weighed in. He weighed 6 lb. and was not very happy at all about making the trip. He knows when we go to the doctors now even if it just for a check up and he is very unhappy to be there. Plus the car ride down to Baltimore stresses him out because he can't lay on his stomach in the car seat. We had a long iscussion today about Arran lack of weight gain. Lately he has almost doubled his food intake. He now eats about 3-4 ounces or 70-80 ml per feed and he feeds about 6-7 times a day. With this increase of food intake and his decrease in reflux problems we expected to see a dramatic difference in weight gain. We did not and we were somewhat disappointed, the dr. was too. Nothing was really decided as to what we should do about this problem yet. Tomorrow his dr will speak with his GI dr and they may decide a course of action then. He will also be visiting his pediatrician next week for another weight check. Hopefully things will look better then.

Over the last week we have been in constant contact with Arran's doctors at UMMS. They are pushing to have a procedure done on him called a Nissen (spelling may be off) Procedure. This involves taking part of the muscles around the stomach and basically pilling them on top of the stomach to help strengthen that muscle in the hopes of preventing reflux. The problem with this that it will close off his esophagus. We really didn't want this procedure done and so we started to investigate other options. Our current understanding is that they now want to do a partial Nissen which will still allow him to eat some but hopefully not throw up as much. He will still need to have a g tube placed in his stomach where the bulk of his food will be given to him. Please pray that we are making the right decision. We will schedule an appointment with the surgeon soon and I'll give you more info when I get it.

In other news Arran just had his flu shot on Wednesday. He had no problems with it and didn't even really cry when he got it. He gave the nurse one of his most pitiful looks so she would feel guilty all day and one big fat tear rolled down his little cheek but that was it. I have heard horror stories about flu shots but we were really pleased with the way he made out.

Arran has an operation scheduled for February 7, 2001. They will be doing the Nissen Procedure although it will not be a full Nissen. This means that he will still be able to eat things by mouth and through his g-tube. We both met with the surgeon last Friday and he went into detail about what will be happening and how long he will be in the hospital and a lot of other things. He will be in the hospital for at least 3-5 days more than likely 5-7 days because he is so small and they will want to make sure that he is recovering. This was a really tough choice that we had to make and we are still praying that it was the right one.

Arran had his surgery yesterday morning. The procedure lasted about an hour and a half with about an hour of post-op recovery. He is still in Intermediate Care with Mom at the bedside. His recovery is going better than expected. He is supposed to get clear liquids (pedialyte) and his medicine through the g-tube later this evening. He has had some swelling because they have pushed a lot of fluid into him to make up for what he lost in surgery; he looks really pudgy for the first time since birth. In addition, he may get his own room later today. Current expectation is that he will be come home Saturday morning. Keep your fingers crossed.

Arran came home this today just after lunch and he is doing wonderfully. He has had his tube in since Wednesday and has kept every drop of his food down since then. So far, so good. Thanks for all your prayers.

February 12, 2001

Arran is doing great! I think that he is still in some pain occasionally so he is on medicine for that. He has taken his food and kept it all down. We have him on the pump at night and he is getting 30 ml (about 1 ounce) every hour for 12 hours straight and then during the day we feed him 45 ml every 3 hours. (about 1 1/2 ounces) He seems to be doing great with this routine except that he can't just lay in bed for 12 hours, who could. He needs to be cuddled and loved and basically entertained. During the day he is more alert and awake than he was before his surgery. I feel right now that we made the right choice. Thanks to everyone who has been checking up on him and keeping him in your prayers. We just hope that he keeps up the good work.

Arran is doing great! He had a check up with his surgeon and he had his 9 month check up (Even though he is 11 months old) with his pediatrician here in town. We have big news. Arran has gained almost 11 ounces in 3 almost 4 weeks. This is the biggest weight gain that he has ever had total. He is awake a whole lot more and active. He now reaches for things and plays with things. Its amazing the things that he is now able to do. We are so happy and proud of him. Today we are going to see the growth and nutrition people and I know that they will be surprised by how much he has gained. I will try to post the results of today's visit this evening when we get home. Things are really starting to improve for our little guy!

Arran had a Drs. appointment with the Growth and Nutrition people at UMMS yesterday. On their scales he weighed in at 6 pounds and 13 ounces. We are so happy with him. His weight gain has been phenomenal in the last 3-4 weeks. They were pleased to see him growing finally. We are going to get weighed now every two weeks and hopefully we will continue to see improvement.

Arran had a weigh in today. He now weighs 7 lb. and 1 ounce. He is being fed 45 ml 3 times a day (about an ounce and a half three times a day). Overnight he gets a total of 420 ml over 12 hours through his pump which is equal to 35 ml (a smidgen over an ounce) every hour. He has round cheeks and his legs are starting to get some fat on them. He is doing great!!!

Arran visited his surgeon today. After a ridiculously long weight in the weighting room he was checked out and his g tube was replaced with a button. He is doing great and he won't have to see the surgeon for reflux any more. He may see the Dr. later for some other surgeries but we are in no hurry to have those done. Yesterday he saw the NICU follow up team. He weighed in at 7 lb. 4 ounces. He's continuously growing!!! We also saw his PT from when he was in the NICU, we were glad to see a familiar face and she gave us some new ideas on exercises to do with him. We also found out that his Speech Therapist that worked with him in the NICU is coming back and we will have an opportunity to work with her through the NICU Follow Up Program. Arran also smiled again today. He hasn't been smiling at all for the last 3 weeks or so. Today he was showing off to his mommy, gram and big brother.

Arran went to his bimonthly weigh in yesterday morning. He now weighs 7 pounds 11 ounces. It is amazing to see how quickly he is growing. He is doing great! His birthday is tomorrow!!

Today is Arran's Birthday!!! Happy First Birthday Peanut!!

Last week Arran went to visit Ms. Portner's Honors Bio Class at CHS. He loved it. He was smiling at the girls and trying his best to show off. He had a small birthday party yesterday here at our house. He enjoyed the icing off of the cake and the ice cream. He's growing and thriving.

Arran had another weight check today. He now weighs 8 lbs even. We were hoping that at this point he would weigh closer to 8 1/2 lbs but he does not. His weight gain over this last two weeks is not as much as it was before. They think that he needs an increase in the amount of food that he is taking in. I agree with that. He gets cranky for no reason at certain times of the day and I think that he is hungry. So now instead of eating 3 times a day he will eat 4 times a day. And instead of getting 45 ml (about 1 1/2 ounces) he will now get 55 ml (a little under 2 ounces). So he will be eating 55 ml four times a day instead of 45 ml three times a day. Plus we will also be increasing his nighttime feeds from 35 ml every hour to 40 ml every hour (a little under an ounce and a half). So with all of these changes we are expecting him to look like the state puff marshmallow man. Otherwise he is doing great.

Ok, I know I'm a total slacker. I have fallen way behind in this and I'm sure some of you were wondering if I was going to ever get around to updating this. At long last I have. Arran now weighs 9 pounds 3 ounces. And thanks to his Daddy you can see his growth curve by clicking here. He is a very happy boy who loves to smile and flirt with people. He is also becoming a little mischievous in that he has found his feeding tube and now plays with it. He had a fever last week that we gave him some tylenol for but the doctor said it was more than likely a virus and it turned out to be just that. He has also developed a habit of waking up in the middle of the night crying several times a night. Last night I think he was up around 6 times and the night before it was 9 times. Needless to say mommy isn't getting very much rest but grad school is over for this semester. Arran is also eating regular baby food 3 times a day now in addition to getting about 2 ounces of formula 4 times a day. He is really filling out. He has a chubby little face now and his arms and legs are getting chubby too.

Arran went in for a weight check today and he now weighs 9 pounds 9 ounces. The Dr. put in a little more water into his balloon because it was loose and we were trying to make it a tighter fit so that the skin around his button does not get irritated. We increased his feeds so now at night he will get a little extra food each hour. Other wise he is doing well. He is a happy kid right now and is smiling at anyone who will talk to him.

Arran was fitted for his first pair of shoes today. These shoes are corrective shoes for his club feet. He needs to wear them at night for several years. In the past he has had splints to wear because his feet where too small for shoes. His shoe size is 000 narrows. The shoes themselves are about 3-4 inches long and they have a six inch bar that runs between them so that they hold his feet in position. I will try to get a picture taken of him in his new shoes and post it up here but it may take a couple of days to develop it and get it scanned. (Yes I know we should get a digital camera.) Anyway, Arran likes his shoes but he doesn't like the bar that runs between them. I first put the shoes on and then we attach the bar. In other health news Arran is doing great. We will go in for a weight check I think wed. of next week.

Today I changed Arran's feeding button. This is the first time that I ever did it alone so I am very proud of myself. It really wasn't any big deal but I still feel like I did a huge thing. Anyway, he was wonderful. He laid there and let me deflate the old balloon and he didn't push the tube out while I got the new one ready and then when I switched them he just watched me. There was no crying of discomfort at all so I am pleased. Anyway, I just wanted to let you all know that Arran has a new button. He goes for a weight check tomorrow so keep your finger's crossed.

Arran had a weight check today. He is officially 10 pounds 1 and 1/4 ounces. He is getting to be a chubby boy!! He is in good health and is really starting to grow. I am not sure what will happen now. I know that some doctors were waiting for him to hit the magical 10 pound mark before they considered doing surgery. So now that we are there we will wait and see what they want to do. He is looking good.

First let me appologize for not having an update in over a month. Brad decided to change the software we use and I have no idea how to use it. This is actually a trial run so if this works be greatful. Anyway, back to Arran. About three weeks ago he had some quote funny blood work done. We spoke to the kidney doctor about this and we were told that his kidney function was down to 20 to 30 percent. This came as some suprise to use since we were told that it was at about 50 percent normally. So we have had blood drawn once a week for the last three weeks. It looks like everything is back to normal right now but we can't be sure it will stay that way. I don't want to write to much in case this doesn't work but if it does I will update ou again tomorrow after Arran's appointment.

Sorry it took so long to get another update up. Arran is doing well agian. He had 4 shots at his last check up. He had a slight fever over night that night but it went away by morning. He now weighs 10 pounds 10 ounces and is doing well.

Good news first. Arran as of last Friday weighs 11 pound 2 ounces. It is amazing to see how much he has grown since his surgery.He keeps suprising us with his weight gains. Now for the not so good news. We visited the eye doctor today. Arran had a horrible time there. He had a breathing spell, where he was breathing very shallowly and he became very panicked due to a procedure they were performing. Anyway he has been a little shaky and out of sorts ever since. We found out that he is seeing very little. He is so far sighted that he cannot really see anything. He is unable to focus in on anything. He will need glasses to correct this. He also has some optic nerve abnormalities and we are not sure how this will pan out in the future. So today was not a good day for Arran (or his family). We now have to try to find glasses that will not only fit his tiny little head but will stay on his nose and ears. I will update again when something new happens.

Arran needs glasses. We went last weekend to try and have him fitted but of course they had to order special pairs and this weekend we will go back in and try on the different pairs to see what will fit him the best. I have a feeling that he is not going to like to wear his glasses. This should be an interesting battle. Health wise he is doing ok right now. We are really happy about his health. (knock on wood).

I received a call today from Arran's Nutritionist from UMMS. They want to change Arran's formula. He is currently on Enfamil with Iron that is concentrated to 24 calories. They now want to change that to Pediasure. He would get a little less in volume because it is more calorie dense that the Enfamil. They want him to start this next Monday morning and continue on with it through the week. Then they want him to get blood work done on Friday to see how his kidneys reacted to the Pediasure. From what I understand the Pediasure has more protein in it than the Enfamil does. You would not believe how many people I talked to on the phone to get this simple change made and how long I spent on the phone explaining this simple to change to other people. It was exhausting. Anyway, we are giving the Pediasure a trial week. Everyone should keep their fingers crossed that this will be ok. I also got a call from the glasses people today and they said that they have 3 pairs of frames in that we can try on him. I think that I will try to take him in tomorrow after school.

First, I'm sorry that it has taken me so long to update his site. I'm in the last few weeks of my student teaching and things are a little beyond hectic. Arran had an appointment yesterday with his nutritionist and nephrologist. He also had some blood work done. He now weighs 13 pounds 12 ounces. The nutritionist says that he's too fat. His weight is exceeding his hieght. Right now we are going to try to slow down his weight increases by backing off of his formula intake. His potassium (K) levels were too high when we did blood work so they want him to get them re-checked on Monday. All in all though he's doing well.

Arran is now close to 14 and 1/2 pounds. He will go in this Friday for a weight check. Arran now has three bottom teeth. We spent a miserable day on Sunday cutting the third tooth. He has One top tooth and a second that is right there and only needs a little time before its in too. He looks silly when he smiles with all of these teeth in his mouth. Things are pretty "normal" for us here. He will get blood work done in 2 weeks to see if the Rocaltrol is working. We will be in contact with his nutritionist after this weight check to see if he needs to be reduced to even fewer calories. Right now he's getting 40 ml of pediasure 4x a day and 240 ml plus 100 ml of water at night. I'm not sure the exact calorie intake that this equals. I guess our biggest problem right now is to get him to grow longer. He's at a healthy weight but he needs more height (or length in his case). He's getting stronger and he reacts to different things now. He likes to bat at toys or rattles. In about a month or so we'll have his first EEG to see what his brainwaves are doing.

Arran is doing great. He really hasn't been sick at all (knock on wood)! He weighs 15 and 1/2 lbs right now and is getting stronger. He is such a happy little kid. He slept through Christmas at Grandma's house tonight. We'll see what he does tomorrow.