Monday, August 27, 2012

Sweat Test Results

I just got the results back from Victor's sweat test, which he had last week. The chloride level in his sweat is 100 mmol/L, which is definitely a positive result for cystic fibrosis.

For babies under six months, a chloride level of:
Equal to or less than 29 mmol/L = CF very unlikely;
30-59 mmol/L = intermediate, means that CF is possible;
Greater than or equal to 60 mmol/L = CF is likely to be diagnosed.

This is the result we were expecting, so that just means that treatment can continue as before. A higher chloride level does not indicate severity. Now we've done all the tests and can say with certainty that Victor has cystic fibrosis. We've done DNA testing, the sweat test and he exhibits symptoms.

Aside from that, everything is fine. Felix has been waking up way too early the past few days and has been really grumpy as a result. It's raining here today so I sent him out in the back yard with an umbrella and he was pretty impressed with that! Victor has had a bit of a blocked nose for a few days but his doctor said that was ok as long as he doesn't start coughing.

Felix is VERY excited that his Grandma is coming to visit all the way from America in a few days! When I was putting him to bed tonight we were reading a book about cars/planes/trucks. He pointed to the plane and said "Grandma coming on the aeroplane, and donuts, and go in the car, and Felix house, and play, and movies!" I don't know how the donuts got in there but he clearly thinks there will be donuts involved somehow!

Sunday, August 26, 2012

Repeat Sweat Test and Check up

The sweat test is the 'gold standard' diagnostic test used to diagnose cystic fibrosis. Two months ago we tried to perform a sweat test on Victor, but he was too little (only 2.6kg) and we could not get any sweat out of him. We learned that the doctors had seen cystic fibrosis in his genes, so how this sweat test could be more accurate remains a mystery to me (I asked the nurse performing the sweat test, she didn't know either).

So this morning we repeated the sweat test. This involves cleaning the skin on his leg; applying some kind of chemical to stimulate the sweat glands; applying an electrode on his calf and another on his thigh; and bandaging his leg to keep it in place. The machine is then switched on and a small electrical current goes through the electrodes to also stimulate the sweat glands. This stays on for a period of time. Then the electrodes are removed, his leg is cleaned and a small sweat-collecting patch is placed on the thigh (looks like a little circle of paper). This is taped down securely and his leg is wrapped back up to keep it warm. He then gets wrapped in blankets to make him hot and sweaty, while this process occurs on the other leg.

Apparently the electrical current feels like tingling on the skin and is not painful. Victor had more of a problem with the cold chemicals going on his leg than the electrodes being switched on. I bundled him in two warm blankets, put a beanie on his head and held him up on my chest so he would also warm up from my body heat as well. He had a feed then slept through the whole thing. It worked; he produced enough sweat to be able to perform the test. The results will probably be back by tomorrow morning and I will get a call on Monday to let me know. This test measures the level of salt in the sweat. A higher level of salt is indicative of cystic fibrosis.

After the sweat test was over, Mum, Felix, Victor and I went to a cafe for lunch before Victor had his check up with his CF team.

First we weighed and measured him. He is up to 4.72kg (10lbs 7oz) and measures 56cm long (22 inches). This puts him on the 10th percentile on the weight chart and 3rd percentile for height. It also means he has put on almost a kilo in a month and grown 3cm since we last saw them, so that is really good news.

Next we met with Victor's physiotherapist. She is happy with how things are going and we discussed starting some little baby exercises and stretches, because exercise is important in keeping him healthy. She said a good idea might be to get a gym ball (one of those big ones you sit on) and gently bouncing with him. Lots of tummy time is also very important for him.

I asked her about these physiotherapy 'vests' I keep hearing about in various CF forums. Straight away she told me they were not recommended. There had been a very large study conducted and it strongly demonstrated adverse outcomes and more frequent hospitalizations among the people using the vest, to such an extent that the study had to be abandoned. So no hospital in Australia will recommend use of the vest. Instead, we will stick with what we've been doing, which is manual physiotherapy.

I then met with Victor's dietician. She was very happy about his growth and we are increasing the amount of enzymes to a scoop and a half for two feeds of the day. Since he's breastfed it's hard to tell how much he actually gets at each feed so we have to just guess. If he's gone a while without a feed (such as overnight) and is likely to take a lot more at the next feed I will choose that one to give the extra enzymes. We discussed starting solids and he'll probably start at four months. He doesn't need to take enzymes for most fruit and vegetables so that will help simplify things when we first start out.

We also saw Victor's respiratory specialist who is happy with him too. He spoke to me about how he was going, looked at his charts and what the other specialists had said, watched him breathing and listened with a stethoscope. Unfortunately he will be away on leave next month for the CT and bronchoscopy so one of the other respiratory specialists will do it and he will see us two weeks afterward. His medication dosage has increased to 1.1mls of antibiotic because he has grown bigger.

We then went to the hospital pharmacy to pick up all of Victor's medicines because we are almost out of everything. I got 3 months' supply of everything, which came to the shocking total of $69.60, even with Victor's health care card which caps all medication prices at $5.60. I suppose that's not really too bad, it could be so much worse, I just wasn't expecting it as I had never bought that much medicine in one go before. I definitely got a few stares from other parents waiting for prescriptions as I needed three shopping bags to carry all the medicine to the car, probably looked like I had just bought out the pharmacy.

So it was a good check up and Victor is doing really well. He is healthy and doing everything that he should be doing. Felix was amazingly well-behaved on our long day at PMH. He played at the big playground on Level 7 with my Mum and came back with a balloon animal (a monkey up a tree! So cute). He was so tired by the end of the day that he almost drifted off to sleep on the way home in the car, and I don't blame him: we had been there for five hours.

Victor sleeping at the cafe after his sweat test.

Felix playing with sugar packets, waiting for lunch.

Tuesday, August 21, 2012

Daily Treatments

Here is a description of Victor's medications and treatments and what a typical day looks like for him.

Creon: These are his enzymes which he must take before he eats anything. They help break down his food so he can absorb nutrients from it. We mix a little scoop into a little bit of apple puree and he takes this immediately before a feed. It will be effective for 30 minutes so if he takes longer than half an hour he will need more, but that has never happened yet. These enzymes aren't drugs, they are just pancreatic enzymes which everyone produces in their body so if someone else accidentally took some they would be totally fine. The only 'side effect' that these can have are potentially causing mouth ulcers if one gets stuck to his gum or something, so I usually check that none are stuck in his mouth. The dosage he gets depends on the fat content of the food he's eating, so as he gets older we will have to read a lot of labels and then work out how many enzymes he needs. He will need to take these for the rest of his life.

Creon with scoop, container of apple puree with baby spoon and a small vial of pre-measured Creon.


Salt supplement: Because he loses more salt than everyone else, we give him a liquid salt supplement throughout the day. He gets 4ml over the course of a day, given in 0.5 or 1ml doses. He really likes the taste of this so I often use it to settle him!

Salt solution and a measured 1ml dose in the syringe.


VitABDECK: This is his vitamin supplement, which he hates. They are primarily fat-soluble vitamins, which he has trouble absorbing because he is pancreatic insufficient, so he gets a little 'top-up' with these to make sure he has good vitamin levels. We break open a capsule and mix half with a little spoon of apple puree once a day. I do this at 6pm every night, right before a feed because he hates the taste, so it's good to quickly wash it down. The vitamin is bright orange because of the Vitamin A in it and it STAINS everything it touches! He has many little outfits with orange stains on them. We use a bib every time, or we will use a muslin cloth or something that we don't mind staining but it still manages to find its way everywhere. I have tried everything to get the stains out but they are permanent! I think he will also need to take this for the rest of his life but when he's older he can just swallow it as a pill, or we can mix it with something else to hide the taste a bit better.

Vitamins


Antibiotics: He takes 0.9ml of antibiotic twice a day. This is to prevent any bacteria growing if he manages to catch something, so it's more of a preventative measure because he is not sick. The antibiotic is actually two different antibiotics together and it's quite strong apparently. The antibiotics have a short shelf-life so I have them in powder form in my pantry with little bottles of distilled water. Every Friday morning I open a new bottle and mix it with 55ml of water to make up the antibiotic, which then needs to stay in the fridge. I think he will be on these for a long time, probably until he is two years old.

Bottle of prepared antibiotics.


Chest physiotherapy: We do fifteen minutes twice a day. There are 6 positions which need to be done, so that's 3 in the morning and 3 in the evening. We have to pat Victor's chest in various positions to help  break up and clear the mucus. It's a lot like burping him except the pats are a bit firmer. We usually call these his 'exercises'. As he gets older we will encourage him to breathe deeply and cough at the end, but right now we can't really ask him to do much! Sometimes this sends him to sleep (like it did this morning!), but if he is overtired he will cry inconsolably until we stop and just put him to bed. This often happens in the evening, so we try to get it done before he is that tired. A little bit of crying (grizzling) is good, because he is breathing deeply, but too much is just not worth it. I want him to have positive associations with the chest physiotherapy because he will have to do this for the rest of his life and at times we will have to do much more than 30 minutes a day. I usually do it with him on my lap, or sometimes on his play gym so he can play at the same time.

I have laminated charts up in his room to help me remember his medications and exercises every day, and I tick off each item as we do it. I find this really helpful as I never have to remember anything now, it's all on the chart. Before I put the chart up I found it especially difficult to remember how much salt I had given him, but now it's very simple.

Laminated charts in Victor's room.


I bring a little insulated lunchbox with me everywhere for Victor's medicine. I measure out individual scoops of enzymes into tiny little blood vials given to me by the hospital. This means I won't lose the whole bottle of enzymes if I leave my bag somewhere or something like that. It also means I can get the enzymes ready one-handed. I also have a small container of apple puree, a baby feeding spoon, and a fork to mix the enzymes into the apples. I usually bring the bottle of salt solution and some 1ml syringes. I don't usually bring the antibiotics with us, and only bring the vitamins if I know we will be out for a long time around dinner.

Is this not the cutest lunchbox on the planet?!


Victor still wakes through the night for a feed, so before I go to bed I will measure out the enzymes into the vials which makes it a lot easier at 3am! I will just have everything ready to go so I'm not searching for things in the middle of the night.

Victor having a nap
Felix playing Candyland
It's really strange giving my baby apple puree at such a young age (he had his first taste of solids at 4 weeks old!) but he has improved so much and is doing really well on it. The only struggle is giving him the dreaded vitamin, but that will improve as he gets older. He takes everything else really well and generally cooperates with his physio.


Friday, August 17, 2012

What is Cystic Fibrosis?

Here is where I get to explain my very basic understanding of CF in layman's terms. I'll start with this quote from the Cystic Fibrosis in Australia website:

"Cystic Fibrosis (CF) is a recessive genetic condition. The gene involved in CF gives instructions for the cells to make a protein that controls the movement of salt in and out of cells.
This salt transport gene lies on chromosome 7. Everyone has two copies of chromosome 7 and therefore everyone has two copies of the salt transport gene. Scientists have called it the CFTR (Cystic Fibrosis Transmembrane Regulator) gene." (www.cysticfibrosis.org.au)

This problem with salt creates very thick mucus which clogs up a number of different organs, most notably the lungs and pancreas. The lungs are unable to clear the thick mucus, so it can build up and cause irreversible damage. It also creates a perfect breeding ground for bacteria which is why we have to be careful about keeping Victor away from infectious illness. This mucus also blocks small ducts in the pancreas, meaning that the digestive enzymes cannot reach the intestine and this is why Victor needs to take pancreatic enzymes to digest his food. Without the enzymes the nutrients cannot be absorbed by the body which leads to malnutrition and weight loss or poor weight gain (as we saw with Victor before he was diagnosed).

CF also affects the sweat, in that Victor's sweat is much saltier than everyone else's. Because he loses more salt than usual he takes a salt supplement, which is a liquid. This salty sweat forms the basis of the sweat test, which is the standard way to diagnose CF.

Cystic fibrosis affects basically every part of the body that makes mucus. But the good thing is that there are lots of things that are unaffected by CF. It does not affect the brain, nervous system, kidneys, muscles, heart, blood or immune system.

The only way to get cystic fibrosis is to be born with it. As previously mentioned, everyone has two copies of the CFTR gene. Victor has mutations on both copies of that gene, which gives him cystic fibrosis. (Victor has two copies of the same gene mutation, called ΔF508. It can also be written as DF508 or F508del-CFTR. This is the most common gene mutation causing cystic fibrosis).

To have a child with cystic fibrosis, both parents need to be carriers. That means that Phil and I both have one normal gene and one gene with mutations. But because CF is recessive, the healthy gene essentially just does the job for the damaged one, so carriers are completely healthy and have no idea that they are carriers (unless they have genetic testing done).

1 in 25 people are carriers of cystic fibrosis and it is more common among people of European decent. (Especially Western Europe). If both partners are carriers, (such as in our case), they have a 1 in 4 chance of having a child with CF. They also have a 1 in 4 chance of having a child with two healthy genes, and a 2 in 4 chance of having a child who is a carrier (with one healthy gene, who will not have cystic fibrosis). We do not know if Felix is a carrier or unaffected. The genetic counsellor told us there was not much benefit in having him tested at this point, but it is definitely something we will discuss with him when he gets older.

There is no way to 'catch' cystic fibrosis, even if Victor is coughing a lot. It is something that he will have for the rest of his life. At this point there is no cure, however treatment has improved exponentially over the years. Once it was a disease of infancy, then a childhood disease, and now people are surviving well into adulthood. Our doctor told us that the current life expectancy for children with CF is now 50 years old. I am certain that will change as he gets older and treatment becomes even more effective. There are some very interesting medications undergoing testing right now that seem to be working at a cellular level so I am keeping an eye out for developments in that area.

But what does this all mean for us? Basically it just means we have a normal kid who happens to have an inherited condition. He will have a pretty normal life: he will go to school, play after school sport, go to friends' houses, go to university, get a job, get married if he wants to. We just need to do his treatments every day (I expect they will change as he gets older or if he is sick) and he needs to always take his enzymes before he eats. We need to be careful about keeping him away from germs, because respiratory illnesses can be much more serious for him. He might have frequent hospitalizations (although hopefully not). We also need to be careful to keep his weight up within the normal range so he will have a high-calorie diet.

Cystic fibrosis does not define who he is, it's just one part of him. It's not something that he will have to announce to strangers on the street but it's also not something to be ashamed of or hide away. It's just a fact of his life and I think raising awareness is a good thing. People will ask questions anyway (especially if he's in the hospital, for example, or even just when he takes his enzymes right before eating) and I'd rather they felt comfortable coming to us to ask questions and receiving accurate information. It's also good for us to be able to talk about it as well so it goes both ways!



Thursday, August 16, 2012

Another Checkup

Victor has been doing really well and his CF team were happy with him at the last checkup. He's been gaining weight really well and is healthy. Because he is bigger now, we increased his salt supplement to 4ml a day. I still give it in small doses over the course of a day: 1ml twice a day and 0.5ml four times a day because it actually helps to settle him! When I put him to bed at night I will feed him and put him in his bassinet. He will be very drowsy and I will then give him a dose of salt and pop his dummy in. Then he will put himself to sleep! I usually do this for naps too unless we are out somewhere.

His doctor and I spoke about Victor having a CT scan of his chest and a bronchoscopy. This is to see if there are any bacteria growing in his lungs and to catch and eradicate them early if there are, before they do any permanent damage. Hopefully there will be nothing but if there is something in there it's definitely best to get it out quickly. He will have both procedures done under anesthetic. I am really not looking forward to it at all. I know it's for the best but of course I am worried. I just wish it were over and done with already. The admission paperwork came the other day and that made it seem much more real and scary. It's scheduled for next month.

Enjoying being outside
The CT and bronchoscopy are also used for research purposes, but we are declining to have that done at this point. That would mean sending copies of the CT images to the researchers as well as taking two extra samples during the bronchoscopy. I am in two minds about it: I understand that research is very important if we want to find a cure for cystic fibrosis. But on the other hand, he is still so little and we don't want him having any extra procedures done or samples taken if he doesn't have to. So we might reassess the situation when he is older but for now we aren't participating in research. That sort of makes me feel guilty, like we aren't doing enough to help find a cure. I guess we can just make a donation or something to ease my guilt.

Yucky Bugs in my House

Well it had to happen eventually...Phil and Felix both got the flu. It was pretty bad. They both had high fevers and bad coughs and were completely miserable. Phil didn't want to get close to Victor in case he caught it too, which is understandable, but it did mean things were very difficult for about a week. Felix was so ill and giving him medicine is a major undertaking. He was very teary all week, hot and uncomfortable and sleepy. I did manage to get some children's nurofen in him a few times which was quite effective but it did involve me either hiding it in yogurt (worked once and that was it) or, unfortunately, pinning him down and squirting it in his mouth a little bit at a time via syringe. A little bit at a time so he didn't spit the whole lot out in one go.

The whole time they were sick we were very worried that Victor could catch it. I was trying to wash my hands frequently and keep Felix's clean too, but seriously what is the point when he goes and sneezes DIRECTLY in Victor's face. Or coughs in his face. I tried my absolute best to keep him away but he was just trying to give his baby brother kisses. I was constantly moving him away, telling him to catch his coughs, explaining that we don't want baby getting sick too etc but there is only so much a tired, flu-ridden two year old can understand and remember.

For a few days I don't think we got off the couch...Felix wanted to be held because he was sick, Victor wanted to be held because he's a baby, and the housework just piled up around us.

But it's ok, we got through it! We are all healthy now. And the amazing thing is that Victor did not catch it! Not even a sniffle. Despite the germs being blasted right in his face. I am so relieved! And I am so happy that we are all feeling better now.

First Hospital Stay

After the shock of finding out Victor has cystic fibrosis, things went pretty well. We made laminated charts for his medicines and physiotherapy, which hang on Victor's bedroom wall and we tick off each item on the charts every day. Once he started the enzymes, the difference was amazing and immediate. His strange poo changed over the course of just a few hours to being completely normal-looking. I couldn't believe how quickly it worked!

We went back to the hospital the next week for a check up. We weighed him (putting on weight very nicely!) and then saw the doctor. I mentioned that he had coughed a few times during the week and had heard (and felt) a distinct 'rattle' in his chest. The doctor listened and agreed with me, and he decided we should admit Victor immediately. Being so little, we didn't want any infection to get a hold of him so we decided the best thing would be to start IV antibiotics right away and 'nip it in the bud'.

I was pretty shocked, so I didn't really process this at all. Our lovely nurse said 'It's ok, you're allowed to cry!' and I just said 'Nope, I'm good.' I really didn't know what to say or think or do. I was told he could be in hospital for two to three weeks. All I could think about was logistics and what we would do with Felix for that length of time and how could we work things out so that someone was always with Victor but we weren't neglecting Felix.

Victor and I went upstairs to the infants' ward and got settled in. My Mum went home with Felix and gave him dinner and picked up some items for me. Phil came straight to the hospital from work.

Victor had an IV placed in his foot after trying both hands. Unfortunately the IV clotted before we could use it and it could not be fixed so out it came and another one went in: they tried his elbow and then finally got it into his other foot. He received antibiotics through this as well as a normal drip to prevent it clotting again.

He did really well overnight and the next day we were able to go home! It was a much shorter visit than we anticipated which is good. He is now on oral antibiotics and will be for quite a while. This is to prevent any bacteria from growing in his lungs.

I think everyone was completely exhausted after the hospital stay and we spent the weekend recuperating. It did also make us a bit paranoid about exposing Victor to illness as we saw just how dangerous it can be for him.

Start Here

I have decided to write a blog about our lives; things are pretty busy around here and I often forget to update people or forget who is up to date and who is not. I also want to create a 'journal' so we can look back and see how far we've come. This blog means that I can write in detail about what's happening and people can read it if they want; they won't have my posts clogging up their facebook news feed! Please don't expect fantastic writing because it's not meant to be. This is really just my thoughts written down. If it's coherent then I will be happy with that.

So, where to start: Felix is two and a half, Victor is almost three months old. Felix is a very clever, happy, active little boy, and Victor is a sweet, smiley, contented little baby. We found out that Victor has cystic fibrosis when he was about 4 weeks old. It was a pretty big shock and sometimes it still is.

Victor was born on 18th May 2012 by a repeat elective cesarean. He weighed 2900g and was 46cm long so he was only a little guy. He has been a very placid baby right from the start and breastfed very easily which was fantastic. Everything was fine for those few days in the hospital; he fed frequently and slept very well for a newborn. He lost a small amount of weight those first few days which is to be expected. All was within the normal range so we went home a few days later.

Five days after his birth, two midwives visited us to check up on us. He had gained 40g which they said was good. Then 13 days after his birth, the community Child Health Nurse came to visit. When she weighed him, we discovered he had actually lost weight. She told me this was nothing to worry about and we would weigh him next week to see how things were going. I mentioned his strange poo to her: it was bright green and pretty disgusting. She never looked at it but said that was fine, just the body clearing itself out after the birth. I had never heard of that before but she seemed to know what she was talking about.

The next week I went to visit her, and he had lost MORE weight. Once again, she told me things were fine. I mentioned that his nappy changes were still the same, she told me the exact same thing. I was starting to doubt her competence but didn't want to be the psychotic mother when a medically trained professional had told me everything was fine.

I was really starting to worry about him though. He was just so tiny and it didn't seem right that he was losing weight. He was barely ever awake but he was still very young. His skin broke out in a pretty bad case of 'milk rash' and he looked so tiny and thin. I started getting this horrible feeling that something was very wrong but I couldn't figure out what. I started looking things up on the internet like lactose intolerance, Celiac disease, Crohn's disease, anything I could think of, but nothing fit. I just kept seeing him grow up to be a sickly, skinny kid and it was an awful feeling. I decided that if he hadn't put on any weight by next week I would take him straight to the doctor.

Well, the next Thursday when I went to weigh him again he HAD put on weight...30g. I had no idea how much he was supposed to be putting on but the Child Health Nurse was very happy about it so I figured she must have been right and now everything would be ok.

Then at 8am on Monday my phone rang. It was a nurse from Princess Margaret Hospital (PMH). She told me the results of the newborn screening had come back showing elevated levels of SOMETHING (cannot remember what she said, it's all a bit hazy actually) and that he might have cystic fibrosis. He needed to come into the hospital the next day for a sweat test which would determine whether he had it or not. I really had no idea what to say and I can't remember a lot of what was said but I will always remember how kind she was. She asked me if I knew anything about CF. The only thing I really knew about it was that it affected the lungs. She told me it also effects the digestive system. This is when things started making sense. She told me to stay away from google because there is a lot of outdated information on the internet. We talked for quite a long time while Felix bounced on the couch next to me...I'm pretty sure I gave him lollies so he would let me talk without interruption even though he hadn't even had breakfast yet. The nurse on the phone gave me lots of info: her phone number in case I had any questions, the name of our doctor, where to go for the sweat test and what to bring. I wrote it all down on an envelope with one of Felix's textas. As soon as I got off the phone I called Phil and I must have sounded pretty terrible. I called Mum and my step mum Sarah and ended up spending the day with Sarah and my Nana, who was visiting that week.

This is when I found out that there had been a previous case of CF in my family, which I had no idea about until then. My Dad's cousin had it almost fifty years ago. Since CF is a genetic condition it was seeming extremely likely that Victor had it too.

The next day Phil and I took Felix to my Mum's house and we set off to the hospital with little Victor. He had a sweat test done but he was so tiny that they couldn't get any sweat out of him. They sent us to see our doctor anyway and that's when we found out that there was really no doubt in their minds that Victor had cystic fibrosis. Two mutations had shown up when they looked at his DNA. That, plus the clinical symptoms he had been showing (weight loss, strange poo etc) was really enough to tell us. We were to start treatment the next day.

So for the rest of the week we took Felix to Mum's house first thing in the morning and headed over to PMH. We met everyone in his CF 'team'. They all sat down with us individually and explained everything to us. We met Victor's physiotherapist, dietician, genetic counsellor, respiratory doctor, gastroenterologist, specialist nurses, and social worker.

Victor's treatment was planned out. We do fifteen minutes of chest physiotherapy twice a day. This involves 'patting' his chest in various positions to help break up and clear the mucus. He takes enzymes with every feed because he is pancreatic insufficient. This basically means that he can't digest fats (which is why he was losing so much weight!). He also takes a vitamin supplement every day (Vitamins A, B, D, E, C and K) and a salt supplement six times a day (3ml over the course of a day, given in 0.5ml doses).

He did (and still does) really well with the treatment and quite enjoys taking his salt! I think he also likes getting the little bite of applesauce, which is what we mix his enzymes with.

Victor, 1 day old.
I did eventually go and google everything and still sit up every night reading everything I can about cystic fibrosis. I generally cope pretty well with it all during the day. I just focus on his treatment and I feel that this is something proactive we can do to hopefully avoid him getting sick. We haven't changed our lives much, just need to find time every day to do the physio and make sure we bring his enzymes with us everywhere. I get a little overwhelmed with it all at night though and this is often when I get upset thinking about what this means for him and what the future holds. I try not to dwell on that though and it is hard to be upset when you look at him. He is just thriving now and has lovely chubby cheeks and a big smile. He is a cuddly boy just like his big brother and the two of them adore each other already.
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