You are peace when my fear is crippling.

In some of my darkest moments this is one of the songs that I could lose myself in and helped me to give it all to HIM.

Praying for you and your family M.

It's been a while

Wow. I feel like I have really neglected Cameron's blog!

Cameron is doing phenomenal. He is moving about everywhere and crawling so well! Cameron also began pulling up in his playpen last week which is obviously another HUGE step for my sweet boy. Sometimes I can hardly believe all that he is learning and doing. We were told he would never do any of this and yet I know that much more is to come.

Things happening in the Jordan household:

Cam is a little stingy with his kisses but that makes them even more special!

He is really enjoying feeding himself.

Cameron is pulling up! He gets onto his knees and then he pulls himself into standing!

Cameron is finally able to pester Caden as every little brother does and it is hilarious.

These goofy boys are having constant laughing fits while playing together every day and I absolutely love it!

Cameron is enjoying rolling the ball back and forth to big brother. He loves this game. These things may seem small to you, but they are huge for my little man's brain!

We are missing Cameron's Occupational Therapist, Lynea (she moved-good luck Lynea!)

As I was typing this email this is what Cameron was doing.

At least its only paper in there! He was very proud.

Big News!

We have known since the moment we met Cameron that he is an amazing little guy and he continues showing us that every day.

This past week we were very blessed to take a family trip to Disney World. We had an incredible time and will never forget it! 

Not only did we have bundles of fun seeing the sights, but Cameron had some surprises in store for us. If you keep up with us on Facebook than I'm sure this is old news to you. While we were there for our week long stay Cameron began crawling! That my friends is HUGE! He also will lean in and give us kisses. It is the sweetest thing. It's so wonderful to see his eyes light up with excitement over his accomplishments. 

Caden and I have always loved to do patty cake with Cameron and last week Cameron started doing it with us! He can even make a fist with his hands and attempts to 'roll 'em'.

Yesterday I took Cameron to see the family doc because little man wasn't feeling too good. I was so excited to go and brag on my guy. For such a grim outlook to have been painted for Cameron it is a great feeling to be able to tell his doctors that because of Jesus Cameron is defying all odds! We were told to expect him to begin declining rapidly and there was no hope, but we have been praying faithfully and I know that so many of you have been as well and I thank you for that! The doctors are literally speechless.Our neurologists is going to be doing some different testing based on Cameron's progress. He now thinks that Cameron may still have a white matter disease, or a leukodystrophy, but maybe it is a type that stops progressing at random and the brain learns to adapt around the damage.

Cameron still has a lot of learning to do, but he has come miles and miles! He is a happy healthy angel and we are so blessed to have him in our lives. 

I will be posting videos of Cameron crawling etc as well as Disney photos soon.

Thank you everyone for continuing to pray for Cameron and our family!

God of the impossible

 

I want to share some amazing new developments with you all. Cameron, according to doctors, should be regressing quickly and losing what function he has. But I don't think our doctors are aware of all of the prayers going up daily for my sweet, sweet boy.

Last week Cameron sat up on his own twice and has done it a few times since then as well! He even started trying to pull himself up while in his playpen. Those are HUGE steps forward for Cameron. He hasn't shown any interest or progression on these things in quite some time.

This morning we are getting the boys ready to go to Houston for yet another opinion on Cameron's condition. We are going to Texas Childrens for the first time. The boys and I sat down for breakfast and I was trying to feed Cameron tiny bites of a breakfast cereal bar before his jar food and he absolutely refused it. He started throwing his head from side to side as if telling me no. This is unusual for him. I sat and looked at him for a few minutes and then decided to let him try on his own. So, I broke it into itty bitty pieces and placed 2 on his tray and I barely had time to take my hand away because he grabbed them so fast and crammed them into his mouth! 

If you don't know much about Cameron's condition this may not seem like too great of news to you, but it is! Cameron is currently unable to do the 'pincher grasp' and hasn't been able to feed himself little snacks. He only eats pureed baby foods and drinks milk. He has been trying to learn here and there, but it's as if all of the sudden he has woke up and is capable of so many new things!

Prayer works! Please continue praying for Cameron and our family. God is moving. Cameron is learning against all odds!

1 Corinthians 2:5

...so that your faith might not rest on men's wisdom, but on God's power.

Making Sweet Memories

This morning as Caden was running around in his underwear singing along to Diego on the TV Cameron and I were enjoying some great worship music. My sweet boy was just smiling as he watched me sing along and then started clapping with the music. He really loved it. Maybe next time Caden will join us :)

Sunday Funday

Today Cody and I took the boys to Antioch church. It was our first time there and we loved it. It was so incredible to be in a room full of young people worshiping God. I don't think you could have been there and not felt God's presence. We love our home church High Point, but I think we will definitely be visiting Antioch again. The boys went to the childrens area which was great in itself. I think they both really liked it. Cameron seemed full of happiness when we picked him up-and Caden was just plain full of it! :)

I hope everyone is having a wonderful Sunday and a fun Halloween. We are meeting up with Gigi and Pop Pop for dinner and then heading to the Zoo Boo this evening. I will be sure to share pictures of it soon and of Caden's bday party yesterday.

Here are the photos and videos I promised from therapy last week that I snapped up with my phone. Enjoy :)

Swinging at therapy

He wasn't so sure about the ball pit.

Smart boy using his hands.

 

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."
Deuteronomy 31:6

I have been trying to do a bit of research to learn about the different types of white matter diseases so that I can be prepared and at least somewhat knowledgeable the next time we speak with our doctor. Looking up these diseases can be quite heartbreaking, but I feel like it is necessary so that I can be proactive with Cameron's care.

There isn't a lot out there on white matter diseases-or at least there isn't when you aren't entirely sure what you are looking for. All I know right now is that Cameron was diagnosed with Leukodystrophy and that there are 34 different forms of it. Since we are still waiting on our results from the Pelizaeus-Merzbacher test I thought I should study up on it.

Here is some useful information I have come across:

Pelizaeus-Merzbacher

Basic Facts About Pelizaeus-Merzbacher Disease and Spastic Paraplegia Type 2
Pelizaeus-Merzbacher Disease (PMD) and Spastic Paraplegia Type 2 (SPG2) are part of a spectrum of disease with varying severity. There are four general classifications with this spectrum of diseases. In order of severity, these are connatal PMD, classic PMD, complicated SPG2, and pure SPG2. Symptoms of each will be discussed below.
What causes PMD and SPG2?
These diseases are caused by a defect in a gene called proteolipid protein (PLP). PLP is involved in transmitting information between cells. It is the most abundant protein present in myelin (see our general leukodystrophy fact sheet for more information on myelin), and is very important for the proper functioning of the nervous system.
How are PMD and SPG2 inherited?
PMD and SPG2 are X-linked disorders (see our fact sheet on genetic inheritance for extensive information on this). Briefly, this means that the gene responsible for the disorder (in this case, PLP) is present on the X chromosome. Women have two X chromosomes, so if one X chromosome has a defective gene, they can compensate for that because they have a good copy of that gene on their other X chromosome. However, because men only have one X chromosome, they only have one copy of each gene. If a gene is defective, they do not have another copy to compensate.
Because of this, men are much more likely to have PMD and SPG2. There are some cases of the diseases in women, but they are less frequent and generally milder forms of the disease.

How are these disorders diagnosed?

Certain symptoms and abnormalities suggest a diagnosis of Pelizaeus-Merzbacher Disease (PMD) and Spastic Paraplegia Type 2 (SPG2).  Because the gene responsible for these disorders is known, genetic screening techniques can be used to confirm a diagnosis. In addition, these same techniques can be used for prenatal diagnosis, as well as identification of women who carry the disease and are therefore more likely to have affected children.  This allows couples to make informed decisions about having a family.
What are the symptoms of Pelizaeus-Merzbacher Disease and Spastic Paraplegia Type II?
As mentioned above, this spectrum encompasses several disorders with varying degrees of severity. These are connatal PMD, classic PMD, complicated SPG2, and pure SPG2. Each is addressed separately below.
Connatal PMD
Connatal PMD is the most severe of this spectrum of disorders. Patients show a delayed development and severe neurological symptoms. Patients may have feeding problems, difficulties with breathing, and the prominent muscle spasms often lead to difficulties in patient care. Seizures may be present. Death usually occurs within the first decade of life. Symptoms are present at birth, and may include many of the following:

• Nystagmus: involuntary movements of the eyes
• Hypotonia: lack of muscle tone
• Ataxia: disturbance of gait (walking) or coordination
• Severe spasticity: tendency to have involuntary muscle contraction
• Stridor: a harsh vibrating sound heard during respiration when the air passage is blocked
• Pharyngeal weakness: the pharynx is the voice box; pharyngeal weakness therefore results in speech difficulties
• Seizures
• Impaired cognition
• Lack of development of speech

Classic PMD
Early symptoms include muscle weakness, involuntary movements of the eye, and delay in motor development that can be seen within the first year of life. Spastic contractions, difficulties with walking, and aimless muscle movements develop later. Despite the prominent developmental delay of motor skills, patients often show slow development in the first decade of life, and then slowly deteriorate until death in mid-adulthood.

• Nystagmus: involuntary movements of the eyes
• Fail to develop head control
• Tremors of the head
• Bradylalia: abnormal slowness or deliberation in speech
• Ataxia: disturbance of gait (walking) or coordination
• Choreoathetosis: a condition marked by aimless muscle movements and involuntary motinos
• Tremor of upper limbs
• Spastic contractions of lower limbs
• Mild dementia
• Dystonia: abnormal muscle tone, with sustained muscle contractions, can typically contort the limbs in an abnormal posture (such as wry neck or writer's cramp).
• Impaired cognition

SPG2
Patients with SPG2 show normal motor development in the first year of life, but between 2 and 1 years of age, progressive weakness and involuntary muscle contractions occur in the lower limbs. In some cases some of the symptoms of PMD occur. These tend to be less prominent in SPT2 than they are in PMD. These symptoms are listed below with definitions as necessary. In some cases, there is neurological involvement, and mental retardation may be present. Cases where there is involvement of the brain are termed “complicated” PMD, while cases of PMD that do not have neurologic complications are termed “pure” PMD.

• Nystagmus: involuntary movements of the eyes
• Optic atrophy: muscle wasting of the eye: this can result in vision difficulties
• Ataxia: disturbance of gait (walking) or coordination
• Dysarthria: difficulty pronouncing words, typically with thick or slurred speech
• Dystonia: abnormal muscle tone, with sustained muscle contractions, can typically contort the limbs in an abnormal posture (such as wry neck or writer's cramp).

Female heterozygotes
Female heterozygotes are women who carry one copy of the defective gene and one good copy of the gene. Because they have the good copy of the gene, these women may not show any symptoms. However, in some cases symptoms have been observed, though the particular symptoms and course of the disease are quite variable. Next we describe a few of these cases.
Female heterozygotes have been found with an early-onset but mild form of PMD or SPG2; in these cases, the symptoms have faded over time. In families that include men with the severe forms of these diseases, some of the female heterozygotes have been observed to have transient neurologic symptoms in childhood, but do not develop PMD or SPG2. Strangely, in families with men with one of the milder forms of these diseases, some of the female carriers in the family have been observed to have a late-onset form of PMD or SPG2.
What is the treatment for PMD and SPG2?
There is no treatment for PMD or SPG2; treatment is currently symptomatic and supportive. This may include medication for seizures and the stiffness or abnormal muscle contractions that are a problem for many PMD patients. 
How is scientific research on PMD and SPG2 progressing towards improvement in treatment or diagnosis?
Scientific research has led to the identification of the gene involved in PMD and SPG2. This has allowed scientists to develop better methods of diagnosing the disease, and has provided families with the option of prenatal screening and improved genetic counseling. As a result of the identification of the gene, many animal models for these diseases have been developed, and we hope that studies of these models may lead to new treatments. 
Other Clinical Names for PMD and SPG2

• SPPX2 (note that this is specifically a term referring to SPG2)
• Perinatal sudanophilic leukodystrophy (note that this term specifically refers to PMD) 

The prevalence of Pelizaeus-Merzbacher disease is estimated to be 1 in 200,000 to 500,000 males in the United States. This condition rarely affects females.