Scott Mallinson

Today marks Scott’s birthday, and one year since a wee boy said hello to the world a little too soon.

Scott had a small party to celebrate his birthday, and indulged in some of his favourite treats (sweet potatoes, blueberry puree, oatmeal, and a tiny tiny taste of icing from his cake).

Scott is still quite small, but has been beefing up over the last few weeks. He went in for a thorough followup at Children’s Hospital, and did very well in his developmental tests. The doctors, although not worried about his size (still 10.5 pounds), would like to see him growing faster. At the suggestion of the doctors, we have been adding new foods a couple of times a week, and giving him as much as he will eat. This seems to agree with Scott, as he has been wolfing down pretty much anything that is not peas. We think that this new diet is helping him pack on the pounds, but we have not had him weighed again quite yet.

Scott is currently trying to get used to wearing hearing aids. After trying many times for an accurate hearing evaluation, we found out that Scott has a significant loss of hearing in both ears. Although the loss is quite severe, he has at least some hearing across the spectrum, and should be able to communicate orally with the help of hearing aids. He was fitted with his aids last week, and it will take many appointments, and adjustments to get them working well. When the doctor first put one of the aids on his ear and turned it on, Scott swung his head around to see what the sound was all about. That showed us that the aids are working. It will take some time, and many tests to see exactly how much he can hear with and without the aids.

Scott is closing in on his first birthday, which is only about five weeks away. His corrected age is about seven months right now, and his weight is about 10.5 pounds. The weight gain has been slow, but his doctor is not concerned, as he is eating well and has been tolerating solid foods without a problem. He has cereal in the morning, and carrots or squash for dinner.

In November, at a routine eye check-up, one of Scott’s eye doctors noticed that the retina in his left eye had become partially detached. This often happens with preemies that have had eye problems, but rarely this long after his first eye surgeries. His right eye is doing fine, and although he will likely need glasses, the retina looks healthy. They decided to try to repair the left eye with surgery, which he got only a few days later. On the first attempt to fix the problem, the surgeon noticed quite a lot of damage in the eye, and was not able to fix anything. At his appointment the following week, the eye was looking a little better, and the surgeon decided to give it another try. The second surgery was a long one. There was a team of surgeons using some brand new equipment that was shipped across the country for his operation. Scott was in the operating room for almost four hours. When they were done the surgeon was quite happy with the results. He was able to get the retina back into place, but it will be a while before we know how much vision he will have in his left eye. The retina will have some damage, but we hope that some of the nerves will regenerate, and he will have some usable vision in that eye. Since then, Scott has had an additional minor laser surgery on his left eye again to encourage the retina to stay in place. He will need another similar procedure in a few months.

In the past months, Scott has been learning lots of new tricks. He is doing very well with his development, and although he is not ready to do so, is very eager to stand up. We are trying to teach him to sit on his own, and he is getting very close, but it is more difficult when all he wants to do is stand on his feet.

We had a very nice Christmas, and Scott has lots of new things to play with. He loved all the Christmas lights, and decorations wishes that Santa could come every night.

Today Scott reached a milestone. He has now been at home for longer than he was in the hospital.

Scott is doing very well. He is making new sounds every day, and his upper body strength is getting better. He has tried a few spoonfulls of baby cereal, and despite being a little puzzled by this “food from a spoon”, we think he likes it.

Scott hopes to weigh 10 pounds by the end of this month, so any extra cereal will help.

On Friday, September 10th, Scott went in for his follow-up appointment at Children’s hospital. He was weighed at 9 pounds (just over 4 kilograms). After growing slowly in August after his surgery, he has started to gain weight faster.

His checkup included visits from several doctors, all of whom were extremely impressed with his progress. He is still small for his age, and needs to work on his muscle tone, but is otherwise doing what he should be doing. He has an exercise routine that he does with his Mom every day.

His lungs are dong very well, but we will need to be very careful with him through the flu season. Scott will need to avoid colds and flu to stay off the oxygen.

Scott is discovering his voice, and is using it to let us know what he wants. He often has lengthly conversations with his toys, and at times can be quite terse.

Scott has successfully completed his first half-year. On Tuesday, August 3rd, he went in for a checkup at Children’s Hospital, and they turned off his oxygen for a while to see how he would do. He was completely happy, and his blood oxygen level stayed high. The doctor said it was fine to send him home without the oxygen. Scott was extremely happy to have the tape taken off of his cheeks for the first time in his life. The hospital gave us a monitoring machine, so we can check his oxygen levels once in a while, but he has been fine ever since.

It is really nice to be done with the oxygen tanks and the tubing.

Scott is smiling all the time now, and can almost completely support his head on his own.

After a few more visits to the neurologist, it was determined that Scott was going to need his shunt operation to provide a permanent solution to the pressure in his head. He was booked for Friday July 23, and the surgery went very well. The operation involvs running a thin tube all the way from the right ventricle in his brain to his tummy. The fluid in the brain is then able to flow out continuously into his peritoneal cavity, which is a space in the tummy where there are plenty of blood vessels that can absorb the fluid back into his system.

Scott did very well with the surgery, and was back at home Sunday after a couple of nights at the hospital.

Scott has been a little bit uncomfortable this week, but is now starting to feel better. His oxygen requirements were cut in half again, so he is getting only a tiny amount of assistance. He is hoping that they will let him come off of the oxygen very soon.

Scott’s last weight (last Friday) was well over eight pounds.

New pictures are finally up! Scott is still doing fine. He has been to the hospital a few times for checkups and appointments, and the news has been generally good. There is still a very good chance that he will need to have a shunt placed in his head to help the fluid flow more easily, but that decision has not yet been made. Scott’s oxygen has been cut in half, and is almost down to nothing. He will be re-evaluated in a few weeks to see if he is ready for a further reduction in oxygen, or to have it discontinued entirely. His weight continues to increase, and he is now getting close to 7.5 pounds.

On Saturday June 12th Scott came home.

After a week of strong feeding, and “good behavior”, Scott was deemed ready to make the big step. He will be on a bit of oxygen for a little while and will still need to be seen by the doctors regularly. We will also need to avoid busy public places and sick people.

We apologize again for the long delay in getting the site updated, but we also moved into our new house over the past two weeks, and our internet access has been unavailable until now. There will be many new pictures uploaded in the next few days, and possibly some video. We will continue to update this site with pictures and occational updates.

Scott has had a great week at home. He saw the pediatrician on Friday and had gained weight again. He spends most of the day in his playpen, and is very active. He can now roll over from front to back, and back to front. This is quite a feat for a baby whose corrected age is only three weeks.

We can’t thank the people at Children’s Hospital enough. Their expertise and care have allowed Scott to come home long before anyone thought he would. We will always be greatful for the care that was given to Scott, and on numerous occations, to us.

First of all, sorry for the long wait for new pictures and updates.

Scott has been great this week and last. He is feeding very well on his own, and weighs 2850 grams (6 pounds, 5 ounces). The situation with the fluid in his head is also improving. The doctors have not found it necessary to tap the reservoir in his head for over 2 weeks now, and the ultrasound has shown that the fluid is no longer increasing, despite not being drained. This is a good sign that Scott may not require a ventricular shunt, but it is still a good possibility that he will.

The staff is now talking about him getting to go home, and we hope that it will happen in the next few weeks. In preparation for going home, Scott will be monitored in a series of trials that will simulate the home environment. They have adjusted his bed to match a standard crib, and they will even put him in a car seat for a while to see how he manages.

Scott now gets to determine his own feeding schedule. Until recently, he was fed avery 3 hours, regardless of his “state of mind”. Now, he is fed when he is hungry, and sometimes he is hungry often.

Today was the day that Scott was due to be born. He had other plans.

At 111 days old, Scott reached his due date at 6 pounds (OK, we did not weigh him today, but he was just shy of 6 pounds yesterday). Scott is still doing well with his feeding, and breathing. He has also been weaned off of almost all of his medication.