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.