Brayden is drain free & tomorrow is National Rare Disease Day!

Saturday night Brayden had his last dressing change.  His stitches are healing up great and it just amazes me how strong he is when we are doing the dressing changes.

Full of smiles after dressing change

Pointing to his arm where he has a small bruise and saying owie

 

Happy boy! 

 

 Sunday morning, I emailed Dr. Bauer about Brayden's drainage tubes and explained how they weren't draining any more and if they were, it was hardly anything.  Usually you keep them in 10 days or if they stop draining, you can pull them early.  Dr. Bauer said it was time to take them out.  So we were happy about that, Brayden would feel better once they are out.  Also that meant no more dressing changes!

Sunday afternoon Brayden started taking a few steps and also eating again.  So happy to slowly seeing him do better. That evening, we took the drainage tubes out.  He had 4 to pull this time, which is never fun.  I held on to Brayden and Geoffrey and my mom pulled them out.  It's pretty easy to take them out, you cut the stitch and pull out the tube.  Of course, it wouldn't feel good to anyone having a tube pulled out.  I don't think I have ever seen Brayden cry so much in pain.  It broke my heart and of course, it was crying right along with him.  He kept saying owie, daddy no.  It was so hard to experience all of that.  Just wish I could take away his pain and not have to put him through any of this.  Very hard at times being a parent, but I do know we are doing what's right for him and he will thank us someday.

Once the 4 tubes were out, Brayden was so happy again.  Glad that is all over with.  Now we have a break until Friday when we do our 1st fill for this round. Praying we have no problems and this round is smooth for us!

We still have plenty of cookbooks for sale if anyone would like one, or if you know anywhere I can sell them, please let me know.  All the money we raise goes towards Brayden's medical expenses, travel expenses, etc.  Thank you everyone who already donated and contributed towards Brayden.  He is one lucky boy for all the love and support he gets!

 Tomorrow is National Rare Disease Day.  The condition that Brayden has is considered a rare disease.  1 out of 500,000 babies are born with this.  The chances of his baby brother are 1 out of 500,000.  If his brother would happen to get this, I better start playing the lottery! Here are some facts about Nevus:

Let's Break it Down: Large. Congenital. Melanocytic. Nevus.

Large

Since nevi can be found on any part of the body, and grow as the body grows, the term large can be difficult to define. Doctors don’t all use the same definitions. Here are the most common ones - a doctor may use any of these in defining the size of a nevus.
A nevus may be described as large if:

• It would take more than one surgical excision to remove. Surgeons and others involved with the removal of nevi, sometimes use this definition.
• It covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand.
• It measures over 8” (20cm) at its largest point on a fully-grown adult. When applying this definition to a newborn or child, the nevus is large if it is expected to be this size by adulthood. For example, a 3” (7cm) lesion on the head or a 2” (5cm) lesion elsewhere, noted at birth, will grow to be at least 8” by adulthood. Therefore these would be considered large nevi at birth.
• It covers a large portion of a major anatomical site. Thus, nevi on the head, legs or arms may be categorized as large even if they do not meet the previous definitions.

The term giant is sometimes used when describing nevi. A giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi (or just satellites) are smaller melanocytic nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth. Sometimes during diagnosis, doctors may use a large number of satellites to support their diagnosis of a large or giant congenital melanocytic nevus. Sometimes a nevus can look like a large mole or a large birthmark.

Congenital

Congenital simply means that it is present at birth. Sometimes people get confused about the difference between congenital and hereditary. Hereditary means you get if from your parents and/or pass it along to your kids. There is no evidence that congenital nevi are hereditary. We know of cases of identical twins, where one child has a large nevus and the other does not. We know of no cases where identical twins both have a large nevus. We know of no cases where a person with a giant nevus has either a parent or a child who also has one.

Melanocytic

Melanocytic means that it is pigment-based. Melanin is the pigment found in human skin. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Nevus

Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark and can be used to describe virtually any mole or birthmark.

Let's Break it Down: Large. Congenital. Melanocytic. Nevus.

Large

Since nevi can be found on any part of the body, and grow as the body grows, the term large can be difficult to define. Doctors don’t all use the same definitions. Here are the most common ones - a doctor may use any of these in defining the size of a nevus.
A nevus may be described as large if:

• It would take more than one surgical excision to remove. Surgeons and others involved with the removal of nevi, sometimes use this definition.
• It covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand.
• It measures over 8” (20cm) at its largest point on a fully-grown adult. When applying this definition to a newborn or child, the nevus is large if it is expected to be this size by adulthood. For example, a 3” (7cm) lesion on the head or a 2” (5cm) lesion elsewhere, noted at birth, will grow to be at least 8” by adulthood. Therefore these would be considered large nevi at birth.
• It covers a large portion of a major anatomical site. Thus, nevi on the head, legs or arms may be categorized as large even if they do not meet the previous definitions.

The term giant is sometimes used when describing nevi. A giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi (or just satellites) are smaller melanocytic nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth. Sometimes during diagnosis, doctors may use a large number of satellites to support their diagnosis of a large or giant congenital melanocytic nevus. Sometimes a nevus can look like a large mole or a large birthmark.

Congenital

Congenital simply means that it is present at birth. Sometimes people get confused about the difference between congenital and hereditary. Hereditary means you get if from your parents and/or pass it along to your kids. There is no evidence that congenital nevi are hereditary. We know of cases of identical twins, where one child has a large nevus and the other does not. We know of no cases where identical twins both have a large nevus. We know of no cases where a person with a giant nevus has either a parent or a child who also has one.

Melanocytic

Melanocytic means that it is pigment-based. Melanin is the pigment found in human skin. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Nevus

Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark and can be used to describe virtually any mole or birthmark.
- See more at: http://www.nevus.org/what-is-a-large-cmn_id554.html#sthash.oERF9mAb.dpuf

Let's Break it Down: Large. Congenital. Melanocytic. Nevus.

Large

Since nevi can be found on any part of the body, and grow as the body grows, the term large can be difficult to define. Doctors don’t all use the same definitions. Here are the most common ones - a doctor may use any of these in defining the size of a nevus.
A nevus may be described as large if:

• It would take more than one surgical excision to remove. Surgeons and others involved with the removal of nevi, sometimes use this definition.
• It covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand.
• It measures over 8” (20cm) at its largest point on a fully-grown adult. When applying this definition to a newborn or child, the nevus is large if it is expected to be this size by adulthood. For example, a 3” (7cm) lesion on the head or a 2” (5cm) lesion elsewhere, noted at birth, will grow to be at least 8” by adulthood. Therefore these would be considered large nevi at birth.
• It covers a large portion of a major anatomical site. Thus, nevi on the head, legs or arms may be categorized as large even if they do not meet the previous definitions.

The term giant is sometimes used when describing nevi. A giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi (or just satellites) are smaller melanocytic nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth. Sometimes during diagnosis, doctors may use a large number of satellites to support their diagnosis of a large or giant congenital melanocytic nevus. Sometimes a nevus can look like a large mole or a large birthmark.

Congenital

Congenital simply means that it is present at birth. Sometimes people get confused about the difference between congenital and hereditary. Hereditary means you get if from your parents and/or pass it along to your kids. There is no evidence that congenital nevi are hereditary. We know of cases of identical twins, where one child has a large nevus and the other does not. We know of no cases where identical twins both have a large nevus. We know of no cases where a person with a giant nevus has either a parent or a child who also has one.

Melanocytic

Melanocytic means that it is pigment-based. Melanin is the pigment found in human skin. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Nevus

Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark and can be used to describe virtually any mole or birthmark.
- See more at: http://www.nevus.org/what-is-a-large-cmn_id554.html#sthash.oERF9mAb.dpuf