Happy 1st Birthday Little Man!

Dear Little Man,

One year ago today, your daddy and I went to the hospital to find out if we would meet you. I was a little nervous about the idea of having an amnio to find out if your lungs were mature but the excitement of knowing that I could potentially be holding you in my arms within a few hours was in full overdrive.

We arrived at the hospital a little before 8:00am and Dr. R met us in the waiting room. Dr. R is the most amazing doctor I have ever met. I feel blessed knowing that he was our doctor. When I worried about you during my pregnancy, he calmly eased my fears. And I will never forgot two moments with him: (1) the day I expressed some uneasiness I was having over your health in utero, he looked me in the eyes and stated that God's blessings were never ending and (2) after he delivered you and things were wrapping up in the OR (you and daddy were on your way to the nursery), Dr. R held my hand and congratulated me and spoke with me for what seemed like eternity. His compassion and caring spirit is second to none. Dr. R has a very special place in my heart. And now back to the story...

Dr. R brought us into an ultrasound room. He explained every single tiny detail about what he was doing before and as he was doing it during the amnio. Daddy held my hand and we got to see you wiggle on the screen for the very last time. Dr. R said he was a little unsure about the way the amniotic fluid looked. Usually, with mature lungs, the fluid has lots of particles floating around. We walked over to prenatal testing, where I was hooked up to monitors to watch you for 30 minutes.

Updates on Little Man

A brief rundown of the last {almost} two months...

• October 19 - saw Geneticist #1 who ordered microarray and tossed around the idea of Marfans
• October 25 - saw cardiologist for echo and ekg --- Little Man would not cooperate for the ekg; echo showed structurally normal heart with a functional murmur (we previously knew about); cardiologist strongly disagreed with the idea of Marfan's and wanted us to see the geneticist there; pulled strings and we saw him that same day
  
• October 25 - Geneticist #2 disagreed with notion of Marfans; thought the microarray was a good call; ordered bloodwork for metabolic disorders after discussing Little Man's history; in addition, he ordered an ABR hearing exam, an eye exam, and a brain MRI
  
• October 27 - saw orthopedist in AL for casting (due to progressive infantile scoliosis); according to Dr. K. Little Man's COBB was 16* but his RVAD was 23* and he shows rotation in 3-4 vertebrae plus a small compensatory curve in his lumbar spine; Dr. K said he was on the fence with casting because of the possible decrease in his COBB (he didn't have the prior xrays to look at because Geneticist #1 misplaced them). I told him that we decided we wanted to wait because of all his upcoming testing (it was a difficult decision for us to make but it had to be done). He actually said he was completely fine with that decision and we go back December 29 for a follow-up appointment with casting tentatively scheduled for December 30.
• October 29 - saw ophthalmologist - Little Man has astigmatism in both eyes. She said this can be common in babies as everything is shorter on them but it usually resolves. Pierce has more than she would typically see at this point so she doesn't expect it to fully resolve. She said that if he were 2 years old (or maybe it was 3 y/o I don't remember), he would get glasses.
  
• November 19 - Geneticist #2 for a health & physical... while examining Little Man, he asked me if Little Man had eaten before the Oct 25 bloodwork or if he was sick. I told him he had a bottle with an hour of the bloodwork and no he was not sick. We reviewed Little Man's metabolics results.His ketones were really elevated - the normal range is 0-30 and he was 205, his CPK levels (an enzyme released when muscles are breaking down - it's released when you overwork your muscles as well... for instance, working out) were elevated - his level was 267 and 0-200 is normal. His ammonia level was slightly elevated too (normal is 0-50 and he was 60). Geneticist #2 basically broke it down to a possible problem with cellular energy, more specifically a possible mitochondrial disease. He decided to repeat the bloodwork to see if those levels were true or not (stress/anxiety, fasting or illness can raise your ketones). He potentially wanted to do a muscle biopsy but he was unsure if he could get the bloodwork back in time. He ordered a urinalysis on Little Man to check his quick ketones. I also found out from Geneticist #1 that his microarray was normal.
  
• November 30 - frenuloplasty (upper lip frenulum), ABR (auditory brainstem response hearing test), brain MRI and muscle biopsy (from the upper right thigh) --- on Tuesday, November 23, I spoke with the genetics nurse and he said that they were not going to do the muscle biopsy because his ketones looked ok in the urine specimen. We were in our pre-op room meeting the anesthesiologist. He asked why such a big work-up was ordered. I informed him that they suspected a mitochondrial disease. He said that changed things from an anesthetics stand point. Mito disease patients cannot receive certain anesthetic drugs. Even though we didn't have a firm diagnosis, he said he would avoid those drugs, just in case. Little Man was supposed to be in the OR for 7am to start the frenuloplasty with the ENT but the anesthesiologist put everything on hold until the ABR team arrived (he said he didn't want Little Man under and intubated waiting on them, that they could wait on him). While we were waiting, a pediatric surgeon walked in and introduced himself. He told us that he received an email from the geneticist at 9:54 the night before asking him to do the muscle biopsy because of the bloodwork. After about 4 hours under a general, he was in recovery
• December 2 - follow-up with Geneticist #2 --- he confirmed that Little Man's quick ketones were in the normal range but in his bloodwork 2 ketone levels came back high (the one that was 205 last time was 319 this time); also, several of his amino acid levels came back high. His ABR was normal and his brain MRI was unremarkable. Little Man is barely gaining weight and starting to flatline on the growth curve. He is not giving Little Man the diagnosis of a mitochondrial disease just yet but he is treating him like a mito patient. We're supposed to let him rest as often as he needs it. He cannot go longer than 4 hours during waking hours without food and no longer than 6 during sleeping hours. He prescribed the Mito Cocktail (vitamin therapy) that they give these patients as well - Ubiquinol, Levocarnitine, Leucovorin and fish oil. The biopsy results take a minimum of 8 weeks to receive the results on. We follow-up with him on March 7 for more bloodwork to see where his levels are
• December 10 - GI appointment - Because of Little Man's reaction (hives wherever it touched) to yogurt, we have to avoid dairy until another milk challenge is done around the age of 2. He and I spoke at length about mitochondrial disease. He said he wanted me to be informed and while the following may not occur, they very well could... we could see his dysphagia and severe GERD come back and at times mito kids end up with G-tubes. I knew that with mito, you can see progression and regression across the spectrum (developmentally, etc) but I never thought about those two becoming problems again. As of now, we can start weaning Little Man off EleCare (his prescription formula, presently 20cal/oz). He will get a 30cal/oz bottle for his overnight feed and any time he refuses a meal, we are supposed to give a 30cal/oz bottle. As long as Little Man receives a nutritionally balanced diet, he will be okay with not having formula or cow's milk. He is not overly concerned about Little Man's lack of weight gain. At this age, a child needs 80cal/kilo (vs as a newborn/younger infant, it's 100-120cal/kilo). Since October 25, Little Man has not gained even an ounce and is still continuing to flatline on the growth curve. Dr. A said "it's ok to be small and/or short, but it's a different thing to stop growing." We go back in 1 month for a weight check. If he still hasn't gained (or gained unacceptably) or lost, the game plan will change quickly (ie he will go back on EleCare 30cal/oz fulltime - we can't do PediaSure because of his milk allergy).

And that's all for now!

Big Trucks

I am so proud of my husband... he is officially a Mack Certified Master Technician.

This title typically takes 4-5 years of hard work to receive... he received it in 3 years.

He is the first ever in the history of his company.

Amazing. And he is all mine!






While we were there, I couldn't help but take pictures of my boys playing in and on some big trucks!





These three guys make my heart want to burst with pride & love. So blessed.

Christmas Decor {1}

I was inspired by this friend of mine to make this:



I am having it printed and then framed... such a cute Christmas decoration! Thanks Brit!

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, 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.

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...

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.

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.

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.

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:

Pick ME!

Pick ME!

Pick ME!

Whew! I still like this, this, this, and this...
and those are only a few more of my favs!

I love Christmas - the sights, the smells, the sounds
and the cards... Enjoy :)

[For bloggers, you can go here, to participate!]

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.

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

Happy Birthday
to an
amazing dad
wonderful father-in-law
super fabulous PawPaw!

We are blessed to have such a special
man in our lives!

what's going on...

So I haven't been around much, which seems to be the trend with my blogging over the last 3 months or so. Lately, I have barely had enough "oomph" to do what I needed to do daily, so all of the non-important stuff has fallen by the wayside. I have thought about challenging myself to blog daily, or at the very least paper-and-pencil journal daily. We will see though...

I would love to sit here and update you on all that has occurred since early September but that is beyond unrealistic.

Things with Little Man have gotten a wee more complicated, but not drastically. I will break it down by specialty:

Speech Therapy: Little Man has finally started to babble - this started a few days before he turned 10 months old. He uses "ma" and "ga" and still likes to scream and shriek a lot. He is no longer gaggy on purees - thin or thick. He has a difficult time manipulating soft, chunked foods. He is not a fan of multiple textures at the same time (ie puree with whole cheerios mixed in - his ST instructed us to do this because texture aversion kids often have problems with a food that has varying textures combined). He does well with crackers and cheerios. We are working on introducing a few new foods over the next few weeks. He now receives about half the amount of oatmeal we once used to thicken his EleCare. We will continue to gradually wean this.

Physical Therapy: He is getting stronger and stronger. He started crawling, out of the blue, on September 19, 2010... on his hands and knees. There was no consistency to it and it came out of pure frustration. But it was the start of something very beautiful!! Prior to this, he wasn't sitting well on his own, wasn't rolling over and refused tummy time. Once he started crawling more and more, his abdominal muscles strengthened and he was able to maintain his balance while sitting on his own. He also started rolling over from back-to-tummy (so he could crawl). He despises being on his back which has made diaper changing/dressing/un-dressing very fun times! About two weeks ago, he pulled to stand for the first time. We are amazed at how much progress he has made :)

GI: We have weaned him off of Nexium and he seems to be doing very well without it. He still spits up/vomits from time-to-time but it doesn't seem to bother him (no screaming, crying, etc). We thought he had finally moved past chronic constipation. He had a 6 week stint of pooping on his own daily. That went down the drain about three weeks ago. We now have to give him milk of magnesia every day so that he is able to poop. We follow-up with GI in early December.

Genetics: this one is very new to us... on Tuesday, October 19, we saw a geneticist with Tulane Hospital. To make a long story short, this doctor gave us two ideas: Marfan's and possibly a (1 of many) collagenopathy (connective tissue disorder). He ordered bloodwork - a microarray test (looks at 44,000 points on every chromosome [if you didn't know, you typically have 46 chromosomes - 23 from each parent] - it can detect the smallest deletion or duplication in a gene sequence). I left feeling a bit uneasy and with several questions. I spoke with the genetics counselor the next day and he was wonderful in helping to answer my questions. He also informed me that we probably wouldn't have the 'array' results back until late November (possibly even early December).

We scheduled Little Man for an echocardiogram and an EKG. We saw Dr. S at O Hospital. When I told him why (ie the Marfan's Syndrome), he looked at me and basically said that he deals with Marfan's on a regular basis (it affects the aorta) and he said he was very positive that Little Man did not have Marfan's. He also said he wanted us to see the geneticist at O Hospital. He pulled some strings and got us an appointment for that day at 1pm. [side note: Little Man was beyond not cooperative with the EKG - he kept pulling the leads off and it was a serious FAIL ;) ] His heart was structurally normal. He still has his [II/VI functional] murmur.

We went upstairs for the genetics appointment. We met Dr. N - I really like him and I'm excited to have him on our team of doctors. Again, long story short... he couldn't believe Marfan's was even mentioned. He said he had a few ideas of varying syndromes in his head but he wasn't going to share with me just yet. He wants to see what the 'array' says. He also ordered bloodwork for metabolic disorders - could explain several things P has dealt with but it's not definitive that he has one just yet. In addition to the bloodwork, he wants P to have (1) another brain MRI since it's been 6 months since his last one. P had a brain CT at 8.5 months old but his head has grown yet again - it's not maintaining the same off the chart curve he once was - his present head circumference is 50cm. His CT stated no significant abnormalities but in the impression section it said: "prominent cerebrospinal fluid spaces overlying both frontal lobes" - because of the location of this extra fluid, he is having (2) an eye exam. Dr. N wants to make sure that the extra fluid is not putting too much pressure on Little Man's optical nerves and he wants to know what his retinas look like. He also wants P to have (3) a spinal MRI - they want to look at the brain and spine as a whole in regards to any extra CSF and rule out other possibilities that can be related to the spine (outside of his scoliosis). And (4) an ABR Hearing Test (Auditory Brainstem Response). These tests will be performed in the next several weeks - all under general anesthesia - and we will have results almost immediately.

Orthopedics: Little Man was supposed to get his first torso [EDF Mehta] cast yesterday. This casting is an alternative to the old school way of thinking for treating scoliosis (bracing then later, growth rods surgery, disc fusion surgery). Daddy & I made the difficult decision on Tuesday that we were going to postpone casting, knowing full well the potential consequences for waiting. We just felt that we need to have his MRIs completed and know where we stand genetically speaking. We decided to still travel to Birmingham to meet Dr. K and become an established patient. My aunt, Big Man, Little Man and myself left late Tuesday night and arrived at 4am Wednesday morning. We got to the hospital early and had his xray taken. I am also very please to have Dr. K on our team. [side note: I accidentally left all of Little Man's imaging studies at T Hospital after his first genetics appointment - they "misplaced" the discs so I was forced to go to AL without them] Dr. K looked at P's xray and we went over previous measurements from the other ortho's. The good news is that one of P's measurements (his COBB) has decreased to 16*. The not-so-good news, his RVAD measurement is 23* (anything over 20 is considered progressive vs resolving) and he has rotation - some of his vertebrae have started rotating. Dr. K started to state that he was on the fence with casting because his COBB had gone down but the RVAD and rotation concerned him. I told him that we had made the decision to wait on casting because of everything else going on. I asked if he would be comfortable with us waiting and coming back for another evaluation. He said yes but if his COBB is even the exact same, he will be casted. We go back on December 29 for our evaluation and the OR is booked for December 30 to do the procedure and a follow-up on December 31.

... And that my friends, is where we stand with Little Man.

I owe you...

{an apology}...

for sucking at blogging lately... in all honestly, up until a few days ago, I felt kinda sucky at everything.

I have so much going on in my life and I can't turn my brain off... pure chaos... and it was beginning to manifest in everything I touched. But with the help of my therapist and some serious workouts at the gym, my mood has changed for the better. I feel like the old, bubbly, happy Mommy is beginning to shine through.

So for the haters/stalkers/crazies that think I don't portray the real me online... guess what, I do. We had a major, life-changing, core-shaking event occur right here, within the Little Bugs household. It's not always sugarplums and rainbows here. We fight, we argue but I don't air my dirty laundry. But one day, I will let you all in on what this event was. Not because I want pity or for you to feel my rawness but because I have been eternally changed - for the good - and I am so thankful as odd as it may seem.

I have grown a lot over the last five weeks. I have been changed to my core. I am a different person. The things that once mattered, no longer matter. It's weird how one event (albeit a major one) can cause so much positive change. One day, when the time is right, I will let you in.

{an update on Big Man & Little Man}...

I have SO much to say about these two sweethearts.

Little Man's

(1) GERD is finally on the upslope! We are seeing some fantastic progress and we've begun weaning him from 20mg of Nexium per day to 10mg of Nexium per day.

(2) We saw a food allergist to rule out food allergies. His bloodwork came back negative for multiple foods but his allergist said that didn't rule out the possibility of Type 4 allergies (cannot be tested for) - we are to slowly re-introduce solids waiting 1 week between each. If we see issues arising, we have to eliminate the most recent food and if that doesn't resolve it, then we eliminate the next one. We follow-up with him in October.

(3) He is still on thickened feeds - but we are very, very gradually weaning him off of that as well. His speech therapist (ST) does not want us offering anything out of his sippy cup other than water. She said that if he were to aspirate, we want it to be plain water vs. food (thereby avoiding the potential for another round of pneumonia). We have to gradually wean him off of thickened feeds because he is used to having to work harder to get his milk out of the nipple. If we were to go straight to unthickened feeds, she said the chance of him aspirating would be very likely because it would immediately hit the back of his throat since it would flow so easily.

(4) His ST comes once a week to work on feeding issues - he is a bit gaggy on think purees. I know it's not truly funny [only slightly ;) ] but for several weeks, when he had any type of food [puree, teeny piece of a puff, a mum-mum, etc] in his mouth, he made this very strange face and it looked as though he had the chills from head to toe with the way his body shook and he made this "bleeeeh" noise. But he is making progress - he seems to be more accepting, he is making the noise less as well.

(5) Still no crawling, still no rolling - his extent of rolling is when we put him on his tummy to force some tummy time... he will either be happy or mad and within 60 seconds, he flips on to his back and is like turtle that is stuck. His pedi wrote orders for PT today in addition to ST.

(6) Speaking of his pedi, today was his [2 week late] 8 month well-visit... he weighs 18lbs 15oz (just barely above 25th%), is 27 3/4" long (just barely below 50th%) and his head... oh his poor, massive head is 19 1/4" (completely off the growth chart and only 1/4" smaller than his 24 month old brother)... his pedi was pretty concerned. He said that even though we had the brain MRI at 4 months old (04.19.2010) and the results were normal, his head wasn't that large (75th%). He has ordered a head CT just to be on the safe side. That is scheduled for next week and we will have the results 24 hours later.

(7) his scoliosis... I am not going to go into extensive detail with this because (a) we have made a decision that we feel is best for our child and we don't want to be swayed or have to hear any negativity and (b) it's a bit much to even detail out for you. After we follow through with our decision, or maybe even during the process, I will post about what is going on. Our emotions run high with this - happy, sad, indifferent, nervous, scared, etc. But we hope and pray the outcome will be more than worth it!

{Little Man's spine as of 08.20.2010}

and now for...

Big Man... Just turned 2! I cannot believe that he is 2 - how did that happen so quickly?!In any event, Big Man is doing well! ST seems to be doing wonders for him. His vocabulary has rapidly expanded. He knows several signs, in addition to using words. Every day he adds new words and signs and he tried hard to mimic words we use. I am SO thankful that we decided to seek out ST!

Today was his 2 year well-visit. His stats are: 27.8lbs (50th%) and 33" tall (25th%). He is so sweet. He loves Little Man. He has a big heart - loves to give hugs and kisses! He gets very excited when he sees his Nana (or Nini as he calls her), Mimi and Papa - he screams their names and looks as though he will burst at the seams whenever they come over. It makes.this.mama's.heart.melt.

Ok... for now... that is all. I really will try to blog here and there (maybe once a week, maybe more, but no promises!)... I am just trying to enjoy and love and treasure what means the absolute most to me.

we're here...

I know it's been awhile but we've had a lot go on lately... big post coming to a screen near you on Monday!

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Random Thoughts

I said in this post that I would share my insight as to what happened... so briefly, here we go:

• I've never felt as poorly as I did prior to that first transfusion. I've never thrown up and dry-heaved as hard as I did that night. It hurt. A lot. I remember at one point clearly begging my mom for her help in making it stop. It was horrible.
  
• I felt pretty incoherent after surgery through Friday morning; I knew people (doctors, nurses, family) were talking to me and I knew I was responding, but I couldn't tell you 90% of what transpired during those conversations.
• I don't remember the ride into the OR - I do remember them putting the mask on my face - I don't remember recovery (at all) - I remember waking up in my room - that's about it. According to my mom, she handed me my phone to call Daddy - I never made the call.
• Blood transfusions hurt like a son-of-a-gun. I forced myself to sleep during them because I felt less pain that way. 6-8" away from the IV site was hurting on my arm. Blood is cold and thick. And it hurts going in. Especially when your IV site is over a bone.
  
• Speaking of blood transfusions... I know it was obviously necessary for me to have both transfusions, but I don't think I can find an adequate number of words to describe how absolutely creepy, disgusting, etc it is knowing that I have other people's blood coursing through my veins. I'm a bit of a germophobe and for 27 years I was 100% Mommy and well now, I'm not.
• I had 6 IVs inside of 5 days - not to mention 10+ blood draws... can we say pin cushion? [it's a good thing that needles don't bother me!]
  
• From Tuesday night - Saturday night, all I consumed was 2 turkey sandwiches... I went home weighing 11lbs more than I did before surgery! [thankfully I'm back down that 11lbs + 5 additional lbs]
• While I was in the hospital, my older sister, A, visited and for some reason we ordered these - I will spare your eyes from the instructional video they send you.
  
• Did I mention that blood transfusions hurt?
• I was scared. Beyond scared. Scared doesn't even begin to cover the way I felt when I started bleeding heavily on Sunday. I was crying. A lot. Praying, even more. I kept praying to God that nothing bad would happen to me. I want nothing more to see my boys grow up. And yes, that thought crossed my mind.
• I am beyond thrilled to have all of that behind me.
• Most importantly, I am feeling MUCH better these days!
• I am so, so blessed to have had Daddy, my mom, MIL and FIL, taking care of me, the boys, and our home. My sisters and aunts were amazing, too! Family is so important and we are so lucky to have such awesome families!

Other randomness floating around in my brain...

• Tomorrow, P goes to see his GI doctor. We're going to discuss his issues with solids and the potential for re-introducing solids... [side-note: I guess I forgot to mention that on here! In early June, P was taken off of solids because he was having serious reflux flareups. His GI doctor thinks he may/may not have allergies to certain foods and he most probably has food sensitivities] If we're given the go-ahead, last I was informed, we will have to wait two weeks between each food that we introduce.
• Tuesday, we have a meeting with Early Intervention for P. This is the first meeting to see if we qualify for an evaluation. If so, they will evaluate him completely but more or less in regards to potential oral and food aversions that could arise in the future from the delay with introducing solids. I spoke with B's speech therapist at length on Friday about P. She said once aversions occur they can be really difficult to reverse and she completely agreed with me in regards to heading it off at the pass. We're also concerned with his pure hatred for being on his stomach and/or back. Hopefully he qualifies! If he does for aversions, B's therapist will handle P's case as well (for aversions).
  
• Wednesday, B starts speech therapy! We're very excited to finally see this ball rolling. We've seen progress with B and we've noticed other speech issues as well. We can't wait for our little man to start talking up a storm!
• We're loving our new home. It's so nice to be around friends again. It's tough being farther away from our parents, but at the same time, we're closer to other family members.
• I am knee-deep in planning B's 2nd birthday party! I can't believe my big boy is almost TWO.

In closing, I ask you to pray for both Cohen's parents and Luke's parents - both of these sweet couples lost their firstborn's to CHDs. My heart breaks for them. And please keep praying for my sweet friend Jenni and her daughter Mia [such a little fighter!] who's battling HLHS.

caught green-handed...

Once upon a time
a little boy
by the name
of B

was CAUGHT...

... caught green-handed, that is.

At first B's mommy thought that only
Buzz Lightyear took the brunt of it...



until she walked into the nursery and noticed
the chair facing the wall...



She spun it around and
saw THIS...


She jailed the culprit...


While she used these and scrubbed... scrubbed... scrubbed...

Now we wait to see what it looks like after it dries...


THE END.

Wordless Wednesday - My Boys

This is my FIRST ever Wordless Wednesday post!

[these pics were taken 07.06.10 downtown NOLA]

Remembering

[I would have posted this on the 25th but seeing as how I was in the hospital with complications, I was unable to]

1 week ago today... June 25th...
that marks the due date for my first pregnancy
June 25, 2008

I still vividly remember the day we found out
God was blessing us with you.
I still remember the day I found out
that He was asking us to send you back.
Although it broke my heart and
temporarily weakened my spirit
I knew there was a reason.

My Sweet Angel Baby
I may have never held you in my arms...
I may have never smelled your sweet skin...
I may have never kissed your sweet toes...
I may have never felt your eyelashes on my neck...
but I think about you all the time.

I have a tiny pink heart tattoo
on the inside of my left wrist
as a reminder
of you.

I know that you watched over your
brother's pregnancies.
I know that you watch over us daily.
I know that you've been there
through some very tough times for us...
showing us the light, guiding us through the darkness
Thank you.

You are our guardian angel.
And I can't thank God enough
for giving us our own
guardian angel.

You have a very special place in my heart.
You always will.
I love you.

In Memory of Cohen

Blogging silence in memory of Sweet Baby Cohen...

THE Ordeal

Things never go as planned do they? Ok, well typically, they do, but this time, far from it... this is an email I sent to my MFM for the boys pregnancies. I was looking to get his opinion on "THE Ordeal" as I'd like to call it...

WEDNESDAY --- On Wednesday morning I had a laproscopic assisted vaginal hysterectomy. Dr. Gala said that my uterus and bladder were really stuck together due to scar tissue and adhesions and that he had to manipulate my bladder quite a bit more than expected. He also stated that I had no significant blood loss. By late night Wednesday, early Thursday morning, I began feeling pretty bad. I started vomiting bile (twice) and afterward, I had a few sessions of dry-heaving I was given phenergan via IV but that did nothing to help, so they started zofran via IV, and that helped tremendously.

THURSDAY --- Lab came in around 5am. When Dr. Brunet (she assisted Dr. Gala) came by to make morning rounds, I was informed of my low H&H and that they wanted to do a transfusion. I was again informed that I had no significant blood loss during surgery. They thought maybe I had some venous bleeders from where the adhesions were removed. I still had the foley catheter because they wanted to give my bladder time to rest - my output was very low. They said my kidneys were shunting off to other vital organs. I was very pale, weak, tired and I felt listless. I received two pints of blood. They checked my H&H approximately one hour post-transfusion and my levels had risen. I felt better post-transfusion - had a little more coloring in my face, attempted eating (but was unable to), and had more energy.

FRIDAY --- The next morning, my levels were lower than they were before the first transfusion. Dr.'s Gala & Brunet came in and said that clinically I appeared to be doing better - still had a hint of pink in my lips and cheeks. I told them that I didn't feel as good as I felt the night before. They gave me the option of having the second blood transfusion - I opted for it seeing as how my count was lower that day than before the first transfusion. They told me they were only doing it to "bulk me up" so that I could go home to my little boys and that once the transfusion was finished, I would be discharged. I received an additional two pints of blood. During the second pint, I was spiking fevers throughout. When it finished, my temp was 100.9. I asked my nurse if they ordered an H&H and she said no and that she thought it was odd. She called "the doctors" three different times and told me that she didn't understand why they were so adamant in not getting it done. She was also concerned that they were going to discharge me with fever. My nightshift nurse came on and I voiced my concerns with her. She called Dr. Rodrigue (according to notes I've read) and informed him of the 100.9 fever and everyone was still okay with me going home. She called him again and he finally said that if I felt better staying one more night and having my H&H checked again in the morning, he would authorize it.

SATURDAY --- The next morning my levels had gone up. Dr. Wax came in and said that I was being kept until 5pm because of the fever I had the night before. I asked her why everyone was so quick to send me home with fever the night before and now today, I had to be kept for observation - it just wasn't adding up to me. She was giggling when she told me that my levels "were good" (this really offended my mom because in her non-md opinion, 8 and 23 are not "good"). Not only were we rubbed the wrong way by her but I was given a male nurse who acted like I was a serious inconvenience to him. Dr. Peresi came in because I was questioning why I lost so much blood and needed two transfusions and the idea of the venous bleeders. She told me she couldn't answer my questions. Dr. Gala called me later and said that he thought it was still the venous bleeders idea. I informed him of the immense pressure I had in my abdomen. He said it was most probably from the bleeding post-op - that it most likely formed a hematoma and that once it re-liquified (within 48-72 hours) that I would feel a release of pressure, my appetite would increase and my bowels would begin functioning. He said that he was going to call the nurse's station to discharge me instead of keeping my until 5p. I went home.

SUNDAY --- The morning started off nicely. My bleeding had gone from light pink spotting to red and a little heavier. I decided to get on the computer to see what to expect/what was abnormal post-hysterectomy. As I was sitting at the computer I could feel myself bleeding more and more. I went to the bathroom and I had a steady stream of blood coming out of me with moments of gushes (it reminded me of when my water broke with B). I was soaking pads in under 10 minutes. I spoke to Dr. Harrington (on-call) and she told me to go to ER. I was in tears and I honestly don't know if I've ever been that scared. I just kept praying that nothing bad would happen to me. I got to the ER and was triaged and told to go back to the waiting room. About 15 minutes later, Daddy asked the nurse why having a hysterectomy on Wednesday and severe vaginal bleeding was significant enough to get a room. A nurse came and spoke to me and it wasn't until she saw how soaked my pants were (and the towel that I was sitting on) that things started to move a bit faster. About 5 or so minutes passed and I was brought to a room. A student nurse came in to ask me questions and look at my incisions. I told her that I had an LAVH and showed her my incision sites (1 supranaval [from my gallbladder] and the other 2, in my c-section incision) - she said "wait did you have a c-section?" and I said "no, a hysterectomy." A few minutes later an actual RN came in and started an IV and the ER doctor. He told her what type of bloodwork to do and we waited for Dr. Harrington. She came in and did a pelvic exam. She said my cuff appeared to be intact, as well as the sutures; she believed that I was bleeding through the cuff, not from it. My counts had risen slightly from the day before so she said that it wasn't new bleeding. I went home and my bleeding was getting increasingly worse and I was starting to feel more weak, light-headed and dizzy. I held a 16ounce cup under me and filled 12 ounces of it in 7-8 minutes. Daddy was disappointed in Ochsner's ER so he took me to East Jefferson (by far worse). I sat in the waiting room for over 1 1/2 hours after being triaged - heavily bleeding. We left. I decided that I would just go home and monitor myself because at least I was in the comfort of my own home. My aunt in Nashville (a surgical RN for over 30 years) was less than thrilled with it all. Her friend is Richard Bracken, CEO of Columbia HCA. He called us and said to head to Tulane Medical Center - he called them personally and rounded a team to see me. We arrived and met with a doctor. They did a CBC, coagulation study, urinalysis and pelvic exam. The doctor said my cuff was intact and stitches looked good. He said that he could clearly see me oozing through the cuff. I also had a UTI so he gave me a prescription for Levaquin.

While admitted, my heart rate was a bit tachychardic - I pretty well maintained 108-123. My blood pressures were normal, for me, most of the time (110s/60s) - I had a few low ones (104/46, 88/68, 96/52).

My H&Hs were:
6/17 - 12.6 hgb 38.4 hct (pre-op)
6/24 05:08 - 7.7 hgb 23.4 hct (pre-transf #1)
6/24 18:23 - 8.6 hgb 25.1 hct (post-transf #1)
6/25 05:16 - 6.8 hgb 20.3 hct (pre-transf #2)
6/25 08:50 - 7.1 hgb 20.8 hct
6/26 04:20 - 8.2 hgb 23.7 hct
6/27 - 9.4 hgb 27.3 hct (ER#1)
6/27 - 8.8 hbg (ER#3)
6/29 - 10.2 hgb 30 hct (follow-up)

And that ladies and gents, is a brief snippet, without all of my opinions, on how things went... check back later this week for my opinions.

Three Years

At times it feels like we've been married longer but
today marks three years of wedded bliss for us.
We were high school sweethearts.
We've been together for ten years.

That's all for now...

Three Years Ago

I was busy taking my bridal portraits

More to come later... the next few days will be filled with bridal portraits and wedding pictures... I love reminiscing one of the happiest days of my life... Enjoy!

1 year ago today

I was 10 weeks pregnant with P...


And I now have two gorgeous boys...

MIA

I can't believe it's been over a month since I last blogged. We've been busy... very busy. I will be blogging more. I will attempt to catch you up on the past month (but in brief snippets as I see fit).

I'm still alive and doing well.

The boys are wonderful. And handsome. And hilarious. And full of energy.

My husband turned one year older yesterday. My love for him runs so deeply.

We have moved. We are 85% settled in.

We've had a few hiccups here and there... with moving, with life, with relationships... growing pains, I guess. Every good thing is worth the fight.

I am in a much happier place mentally. I feel as though things are falling into place. Life is good today... life is good today.

And on that note, I leave you with two pictures... this is what it looks like when two chunks of your heart exist on the outside of your body...

Quick Update

I'm going to be honest with you...
I'm in a bit of a funk...
hence why I've not blogged lately.
Too much is going on lately...
it's impacting me deeply...

But here are a
few updates...

B
was approved for
Early Intervention
He's "significantly delayed" in
communication and cognition
(although I disagree with the cognition area)
He's doing well post-surgery
He has a teeny cold
I love him

P
was scheduled for an
Endoscopy with a 24 hour pH probe study
for today but
it was cancelled upon arrival because
last night he
was retracting: sub-costally and sub-sternally
and wheezing
and breathing really, really fast - high 50s
We'll go back
in two weeks to attempt the edg/pH again
I love him

My boys make it
worth waking up every day
I could kiss them a
million times

They give me hope
They are my everything

New Angel

*updated*
One of my best friends, Holly, went in to be induced last night at 39w5d.
They began hooking her up to the fetal heart monitor and they couldn't find a heartbeat.
They brought in an ultrasound machine... two techs later... still no heartbeat.

Garrett Michael
April 21, 2010
10lbs 9oz
2:30pm

Sweet baby boy,
you will be greatly missed.

Please pray for Holly, Guy and their children, Bryanna, Gena and Gavin.

My heart is broken for her.
I wish I could take away her pain.

Please pray for a peace that fills the room when she welcomes sweet Garrett's body into her loving arms.
*Holly was able to hold him for awhile and she said it was very peaceful.

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. " Psalms 139: 13-16

B & P

B had surgery 1 week ago today.

He had a PE tube placed in his left ear, a maxillary (upper-lip) frenectomy and a sub-lingual (below tongue) frenectomy. We arrived at North Oaks at 6am and shortly thereafter, we were taken to B's room. The nurse went over his medical history, gave us a gown for him and administered a dose of Versed to B. Oh my... I can't even begin to put into words what the Versed did to him. I felt slightly bad for laughing at my 19 month old but he was l.o.o.p.y. to say the least. He barely had head control and he was smiling and laughing and just plain goofy. The RN brought Daddy and I into surgery holding with B. We met with anesthesia and Dr. Peltier (such an AMAZING ENT). And then it was time... time to hand my baby over... so difficult. He went into the arms of his surgery nurse screaming and crying and I walked away with Daddy’s arm around my shoulders, him telling me that it would be okay while massive tears were welling up in my eyes. That walk back to the waiting room was tough for me. Daddy left for work and I was left there with my mom and MIL. At 8:02am, we were brought to the conference room because his surgery was over and he was on his way to recovery! Dr. Peltier came and spoke to us - he said that he only had to place a tube in his left ear and he performed both frenectomies. He placed 1 suture below his tongue and 3 on the inside of his upper lip. He said that I should expect for B to be cranky/fussy for a few days because of the oral surgery. Then he brought me into the recovery room and B was still asleep - they were working on arousing him. And they succeeded. And he was less than thrilled. He kicked, hit screamed, flailed, threw his body backwards... full on tantrum... all with his eyes closed... for a good 15 minutes. This reaction is quite normal for small children after anesthesia. And this continued the entire time we were at the hospital. My mom and MIL were insistent that he was in pain even though I kept reassuring him that he was not. Dr. Peltier administered a local anesthetic at both frenectomy sites; he said that he would be numb for a couple of hours. They had also given his a dose of Tylenol with Codeine in recovery. Our nurse discharged us and once we were home, the nugget was pretty happy. The crying stopped. He ate a small meal, took a nap and was a little cranky on/off for the rest of the day. And B was back to normal the next morning!

We've already noticed a few changes since his operation. When he points to his/my/P/daddy's eyes, he says "eyyyy" and he has said "nooo" once when he pointed to his nose! And the biggest change is that B is FINALLY sleeping through the night! B has never slept for longer than a 6-7 hour period. On an average night, he was waking 2-4 times. But big man sleeps all.night.long. - we now believe that his ear has been bothering him all along. Oh this was such a blessing in disguise!

Yesterday, P underwent general anesthesia for his first time... at 4 months old... for a brain MRI.

We arrived at OLOL at 7am (and thankfully P only lost it for about 30 minutes from being NPO after 3am). We were wheeled down on his bed shortly after 9am. I met L who was absolutely amazing. I had one last consent to sign (for contrast) and I handed my sweet baby over... again... really difficult... had to fight back tears... but I knew that he was in good hands with L. She came out a few different times (1) she said he was asleep and they were going to start his IV; (2) his IV was started - top of the hand - got it on the 1st stick - he has really good veins; (3) he was intubated - got it on the first pass; and (4) they had started the imaging. Another RN came out and said that things were going well and we could go grab a bite to eat and she would call us when he was headed to recovery (I gave my cell and my mom's cell numbers). We had breakfast and decided to walk around the gift shop. While in the shop I decided to look at my phone for the time... they had called me... twice... and I missed both calls. We went straight to the surgery waiting room and told the receptionist what happened. She called recovery and he wasn't there yet. Mom and I waited in the hall because the waiting room was pretty packed and I am too much of a germ-o-phobe to sit immediately next to a stranger if it's unnecessary. Out of nowhere I heard a very familiar I.am.really.angry sort of cry and sure enough, I saw P, 2 RNs, and his bed whisk past us in another hallway. A few minutes later I was called to go into recovery.

L was back there and she said that everything went well. I thanked her again for being with him. They gave him 2 ounces of sugar water because the poor guy was starving! They said to go ahead and get his bottle ready because he was still screaming. And then my sweet baby was placed in my arms. I started feeding him and one of the RNs did a "blow-by" because his O2 sats were in the low 80s. After a few minutes, she had him into the mid-90s. He ate 25cc and lovingly gazed into my eyes. P busted out of recovery really quickly! He was oh.so.different from B in regards to his post-anesthesia mood. P was happy and smiling and giggling. Because he was responding so well, we were discharged at 12:15pm.

On the way home, I called the pedi's office to see if I could get him in for his 4 month well-visit. I went home, picked up B and we were off again. P’s stats were: 13lbs10oz, 24" long and 17.5" head circumference. Dr. Leumas came in and I asked if it was okay for him to get his vax because on the MRI with contrast under anesthesia. He said yes because everything should have left his system by then. He asked what P had an MRI of and why. I said "of his brain" and "because Dr. Alberty took several measurements of P's head - all came back larger than normal and his suture lines were wider than expected and his soft soft as well." Dr. Leumas said it was a good call on Dr. Alberty's part because P's head circumference was concerning. At 3 months old, Pierce was barely below 50% and now at 4 months he is 90%. Dr. Leumas also stated that we have to be very aware of P's developmental milestones because when you see many sub-systems (his GI tract, spine, possibly his brain) being affected, you have to look at the big picture and ask "why" and "could something be causing all of these issues." We spoke a little more in depth about P's scoliosis. Dr. Leumas advised me on a few different points in regards to questions I need to ask from here out. He was a little concerned about how much radiation P has received... inside of two months, P has had:

• one - 3 film chest x-ray
• one - 2 film chest x-ray
• one - Upper GI series
• two - pharyngograms (VFSS)
• two - single film chest x-rays for Ng tube placement
  

At the earliest, we will have MRI results later today and at the latest, Thursday. I would be lying if I said I wasn't concerned. I initially was more concerned about him undergoing anesthesia than what the actual MRI could potentially show. But after our pedi appointment yesterday, I am a little concerned. I will update once I hear from our GI doctor.

I don't know what to think. I don't know what could be the bigger cause for all of these sub-system issues. I don't dare Dr. Google it because I know I could be overwhelmed with every potential issue out there. And in all honesty, I wouldn't even know where to begin.

I feel like I am continually trying to remind myself to put one foot in front of the other. To breathe. To stay strong. I have to.

But it's hard. I despise not knowing answers. I am afraid of the unknown.

I have moments where I feel like I am cracking under all of this pressure. I have moments where I would love to do nothing more than to kick and scream and cry until all my tears are gone.

I have been deep in prayer. I pray for my boys continually. I pray for strength and wisdom in advocating. I pray for patience in dealing with others. I pray.

Thanks for keeping us in your prayers. We need it. I need it.

ps. Please keep Kip & Angie in your prayers. On Sunday, Hogan went to heaven at two weeks old. He fought a very courageous battle with Trisomy 18.