Monday, November 29, 2010
Tomorrow
Tomorrow is a big day for our little man... if you can, please keep him in your prayers and thoughts! I will post updates throughout the day... thanks :)
Monday, November 22, 2010
Monday, Monday
Forgive me for the randomness of this post...
Little Man - is crawling, pulling to stand and every once in a blue moon cruising along the couch... he also stood unassisted three times over the weekend!
Big Man - attempted toilet training today... massive fail. We thought he was ready last week because he was ripping his diaper off any time it was wet or dirty. He kept sitting on the toilet - we would randomly find him in the bathroom. So we bought lots of training pants (not to be confused with PullUps) and big boy underwear... we decided that today would be the day, Big Man would kiss diapers away forever. We had charts, star stickers, Skittles and lots of underwear ready to roll... this morning, Big Man fuhreaked out when I put his underwear on. He refused to sit on the toilet. He had accident after accident after accident after accident. We've decided that maybe he's not quite ready. We're in no rush and we don't want to push him into something he doesn't want to do... so for now, Pampers, you can continue to thank me for my investment.
Little Man - as of Friday, weighed 20lbs4oz (20th%) and his length was questionable... he's either 27.75" long or 28" long (less than 10th% either way).
Big Man - is talking, talking, talking. His vocabulary expands daily. He is speaking in 2-3 words sentences. ST is working wonders for him!
Little Man - is babbling with "ma" "ba" and "ga" --- ST is going great... PT on the other hand, welllll, I fired his PT. She was always late and we never had a scheduled time.
Little Man - is crawling, pulling to stand and every once in a blue moon cruising along the couch... he also stood unassisted three times over the weekend!
Big Man - attempted toilet training today... massive fail. We thought he was ready last week because he was ripping his diaper off any time it was wet or dirty. He kept sitting on the toilet - we would randomly find him in the bathroom. So we bought lots of training pants (not to be confused with PullUps) and big boy underwear... we decided that today would be the day, Big Man would kiss diapers away forever. We had charts, star stickers, Skittles and lots of underwear ready to roll... this morning, Big Man fuhreaked out when I put his underwear on. He refused to sit on the toilet. He had accident after accident after accident after accident. We've decided that maybe he's not quite ready. We're in no rush and we don't want to push him into something he doesn't want to do... so for now, Pampers, you can continue to thank me for my investment.
Little Man - as of Friday, weighed 20lbs4oz (20th%) and his length was questionable... he's either 27.75" long or 28" long (less than 10th% either way).
Big Man - is talking, talking, talking. His vocabulary expands daily. He is speaking in 2-3 words sentences. ST is working wonders for him!
Little Man - is babbling with "ma" "ba" and "ga" --- ST is going great... PT on the other hand, welllll, I fired his PT. She was always late and we never had a scheduled time.
Saturday, November 20, 2010
about the good news train...
It's come to a stop (hopefully just temporary). I hate even saying that it has stopped. I feel like it makes me sound negative but it is what it is (I dislike that saying too...)
So why do I feel like this?
Little Man saw his geneticist on Friday for a health & physical (in preparation for Nov 30). While he was doing a physical exam he asked me "Did Little Man have a bottle prior to his bloodwork?" I told him around 1 hour prior to the bloodwork and he snacked on Cheerios all morning long. He asked about his bottle before that as well - to which I replied, approximately 3 hours. He then asked if Little Man was sick that day. I told him no. My curiosity was peaked at this point... I asked him if he received the results of Little Man's metabolics testing back. He said yes and that we would discuss it in a few minutes. He finished his exam.
Then we sat down to talk...
He proceeded to explain to me that Little Man's ketones were really high. The range of normal is 0-30 and Little Man was over 200 (I don't remember the exact figure because I was a bit shocked at the moment to see such a high number in comparison to a low range). He further explained that fasting or illness can cause elevated ketone levels.
Then he pointed out that Little Man's ammonia level was elevated. The normal range is 0-50 and Little Man was 60. The human body has a 6-point Urea Cycle. In one step, ammonia (toxic to the human body) is broken down in to urea. Dr. N said his levels are just barely high and if this was his only elevated level, he would consider it a transient result. He also stated that his level is not at a point where we should be concerned about toxicity.
Lastly, he pointed out that Little Man's CPK level was elevated. The normal range is 0-200 and Little Man was 267. Dr. N basically said that CPK is an enzyme that is released when a muscle is breaking down.
He is of the mind set that these labs are new pieces to Little Man's complex puzzle. He is concerned about cellular energy.
Do you remember what this object is?
For those of you that are unsure, it is a mitochondria. [side note: I vividly remember making a 3D diagram of one in middle school... I used Twizzler pulls, toothpaste and more!]
Dr. N is thinking that Little Man may very well have a MITOCHONDRIAL DISEASE.
What is that you may ask...
We've been given very specific orders to not let Little Man go longer than 4 hours without food during waking hours and no more than 6 during sleeping hours (since the body is at rest during that time). If he becomes sick, he needs to be seen by a physician. We cannot wait out an illness.
Dr. N repeated Little Man's lab work and added a urine specimen. A chunk of it, we will not have back in time for Nov 30 (even with calling it in stat because it has to go to Salt Lake City). If Little Man's levels come back the same, Dr. N will be adding a muscle biopsy to his workup for Nov 30.
And for now, that's where I will leave things... we're still trying to digest all of this... please keep my sweet boy in your prayers.
So why do I feel like this?
Little Man saw his geneticist on Friday for a health & physical (in preparation for Nov 30). While he was doing a physical exam he asked me "Did Little Man have a bottle prior to his bloodwork?" I told him around 1 hour prior to the bloodwork and he snacked on Cheerios all morning long. He asked about his bottle before that as well - to which I replied, approximately 3 hours. He then asked if Little Man was sick that day. I told him no. My curiosity was peaked at this point... I asked him if he received the results of Little Man's metabolics testing back. He said yes and that we would discuss it in a few minutes. He finished his exam.
Then we sat down to talk...
He proceeded to explain to me that Little Man's ketones were really high. The range of normal is 0-30 and Little Man was over 200 (I don't remember the exact figure because I was a bit shocked at the moment to see such a high number in comparison to a low range). He further explained that fasting or illness can cause elevated ketone levels.
Then he pointed out that Little Man's ammonia level was elevated. The normal range is 0-50 and Little Man was 60. The human body has a 6-point Urea Cycle. In one step, ammonia (toxic to the human body) is broken down in to urea. Dr. N said his levels are just barely high and if this was his only elevated level, he would consider it a transient result. He also stated that his level is not at a point where we should be concerned about toxicity.
Lastly, he pointed out that Little Man's CPK level was elevated. The normal range is 0-200 and Little Man was 267. Dr. N basically said that CPK is an enzyme that is released when a muscle is breaking down.
He is of the mind set that these labs are new pieces to Little Man's complex puzzle. He is concerned about cellular energy.
Do you remember what this object is?
For those of you that are unsure, it is a mitochondria. [side note: I vividly remember making a 3D diagram of one in middle school... I used Twizzler pulls, toothpaste and more!]
Dr. N is thinking that Little Man may very well have a MITOCHONDRIAL DISEASE.
What is that you may ask...
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. {source}
We've been given very specific orders to not let Little Man go longer than 4 hours without food during waking hours and no more than 6 during sleeping hours (since the body is at rest during that time). If he becomes sick, he needs to be seen by a physician. We cannot wait out an illness.
Dr. N repeated Little Man's lab work and added a urine specimen. A chunk of it, we will not have back in time for Nov 30 (even with calling it in stat because it has to go to Salt Lake City). If Little Man's levels come back the same, Dr. N will be adding a muscle biopsy to his workup for Nov 30.
And for now, that's where I will leave things... we're still trying to digest all of this... please keep my sweet boy in your prayers.
Thursday, November 18, 2010
Amazing News!
On Tuesday we received INCREDIBLE news... (I would have posted sooner but I wanted to let Preemie Awareness Day be just that)...
Little Man's microarray came back COMPLETELY NORMAL! Genetically speaking, he is normal - there are no deletions or duplications on any of his 46 chromosomes!
I feel like a huge weight has been lifted from my shoulders. I can breathe a little easier. God is SO good.
In other news, he is still most definitely allergic to milk. We tried a milk challenge with some Yo Baby yogurt and he broke out in hives wherever the yogurt touched. The first time we thought it may be related to the strawberry puree in it. The next day we tried banana yogurt... hives. I spoke to his GI doctor (well nurse who consulted with the doctor) and we are to continue avoiding all dairy products. Little Man will most likely continue on EleCare past the age of 1 and possibly around 15 months, we may try another milk challenge. We have a follow-up on December 1 to discuss our future game plan for Little Man.
Little Man saw a neurologist on November 8. Her only concerns were: (1) Macrocephaly - if his head continues to grow, she wants it followed with CT imaging studies; (2) scoliosis - curious about a possible cause but awaiting spinal MRI results; (3) his legs, upon opening are slightly floppy; this can be indicative of low tone but overall, his strength is great. Her suggestion was to have his PT work on this; and (4) he appears to be more right-hand dominant - selective handedness should not be seen in children until approximately 18 months old. His reflexes are the same on both sides, so there is no apparent cause for this. She wants his PT to work on strengthening his left side.
We are still awaiting the results from the metabolics testing that Dr. N ordered. I think we will receive those results in approximately 1-3 weeks.
Little Man has a big day approaching... on November 30, he will undergo (1) a frenuloplasty (clipping of the skin that connects the upper lip to the gum line - Big Man had the same procedure done in April), (2) an ABR hearing test, (3) brain MRI and (4) spine MRI. We've been informed that the procedures, in total, will take around 5-6 hours. Daddy & I are preparing ourselves for that long day, but we hope to receive more incredible news!!
Please keep our family in your thoughts and prayers on November 30. Thank you.
Little Man's microarray came back COMPLETELY NORMAL! Genetically speaking, he is normal - there are no deletions or duplications on any of his 46 chromosomes!
I feel like a huge weight has been lifted from my shoulders. I can breathe a little easier. God is SO good.
In other news, he is still most definitely allergic to milk. We tried a milk challenge with some Yo Baby yogurt and he broke out in hives wherever the yogurt touched. The first time we thought it may be related to the strawberry puree in it. The next day we tried banana yogurt... hives. I spoke to his GI doctor (well nurse who consulted with the doctor) and we are to continue avoiding all dairy products. Little Man will most likely continue on EleCare past the age of 1 and possibly around 15 months, we may try another milk challenge. We have a follow-up on December 1 to discuss our future game plan for Little Man.
Little Man saw a neurologist on November 8. Her only concerns were: (1) Macrocephaly - if his head continues to grow, she wants it followed with CT imaging studies; (2) scoliosis - curious about a possible cause but awaiting spinal MRI results; (3) his legs, upon opening are slightly floppy; this can be indicative of low tone but overall, his strength is great. Her suggestion was to have his PT work on this; and (4) he appears to be more right-hand dominant - selective handedness should not be seen in children until approximately 18 months old. His reflexes are the same on both sides, so there is no apparent cause for this. She wants his PT to work on strengthening his left side.
We are still awaiting the results from the metabolics testing that Dr. N ordered. I think we will receive those results in approximately 1-3 weeks.
Little Man has a big day approaching... on November 30, he will undergo (1) a frenuloplasty (clipping of the skin that connects the upper lip to the gum line - Big Man had the same procedure done in April), (2) an ABR hearing test, (3) brain MRI and (4) spine MRI. We've been informed that the procedures, in total, will take around 5-6 hours. Daddy & I are preparing ourselves for that long day, but we hope to receive more incredible news!!
Please keep our family in your thoughts and prayers on November 30. Thank you.
Wednesday, November 17, 2010
The Fight For Preemies
"Every year, 20 million babies are born too soon, too small and very sick-half a million of them in the U.S. November 17th is when we fight!"
It astounds me that 1 in 8 babies are born prematurely. Premature birth is near and dear to me as I was born 4 weeks early... I spent 9 days in the hospital with jaundice.
My niece & nephew, C & C, were born at 35w6d gestation. My nephew weighed 6lbs 4oz and was in the NICU for a little over a week. My niece weighed 3lbs 15oz and was in the NICU for around 2 weeks.
I've watched several fellow bloggers stories unfold surrounding their experiences with premature birth - the moments leading up to their baby(ies) early arrival, the NICU stays and life after the NICU... because for some, it doesn't end with the NICU doors closing behind them.
Read about their stories:
Grace & Faith - 23w5d and 24w gestation
Brayden - 28 weeks gestation
Bennett - 26w5d gestation
Drew, Ben, Ethan & Savannah - 30w1d gestation
Marcus & Maddox - 31w1d gestation
C - 23w6d gestation
With my second and third pregnancies, I was blessed with two full-term, 38 weeker, baby boys, Big Man & Little Man.
Preterm birth rates have very marginally improved in the United States. Today, the premature birth report card was released by the March of Dimes. The United States received a grade of D. Aside from me being a perfectionist, at no time is that grade acceptable. Awareness and advocacy are our tools in fighting the good fight... let's start using them.
We are the voices for these teeny, tiny lives. Let's stand up and fight for them.
Monday, November 15, 2010
Shutterfly + Christmas = AHHMAZING
Have you heard of Shutterfly? If you haven’t, let me catch you up to speed… they are a fabulous online photo printing service. I have used Shutterfly in the past for various projects... a few examples include: our wedding album, wedding announcements and birth announcements... some of the most joyous moments of my life!
The holiday designs they rolled out for 2010 are superb. I love the colors, the layouts, the fonts! I could go on for hours about what I love, but I sill spare you from permanent retina damage
[you can thank me later].
I had the pleasure of participating in a product review for bloggers.
It seemed simple enough… that is, until I had to narrow it down
to three favorites… what?!
“Dear Shutterfly, you must not know me as well as I thought you did…”
I had a tough time narrowing it down!
When it comes to holidays, I tend to be a bit more traditional and that definitely wasn’t a problem in regards to their selection. My problem was falling head.over.heels for the non-traditional designs. I was really tempted to do something non-traditional (like this)!
But without further adieu, here are my selections:
The holiday designs they rolled out for 2010 are superb. I love the colors, the layouts, the fonts! I could go on for hours about what I love, but I sill spare you from permanent retina damage
[you can thank me later].
I had the pleasure of participating in a product review for bloggers.
It seemed simple enough… that is, until I had to narrow it down
to three favorites… what?!
“Dear Shutterfly, you must not know me as well as I thought you did…”
I had a tough time narrowing it down!
When it comes to holidays, I tend to be a bit more traditional and that definitely wasn’t a problem in regards to their selection. My problem was falling head.over.heels for the non-traditional designs. I was really tempted to do something non-traditional (like this)!
But without further adieu, here are my selections:
Thursday, November 4, 2010
Mornings...
Mornings can be chaotic around here.
For instance, this morning...
One of our fab boxers
decided to poop in the hallway
and Little Man found it
before any one else did
And he ate some
and smeared it down the hallway
and all over himself.
Yay for mornings.
For instance, this morning...
One of our fab boxers
decided to poop in the hallway
and Little Man found it
before any one else did
And he ate some
and smeared it down the hallway
and all over himself.
Yay for mornings.
Tuesday, November 2, 2010
Snips and Snails...
These boys are my life, my sunshine, my heart. They are two of the most amazing blessings He has bestowed upon me. I am blessed to be called their mama.PawPaw's Birthday
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