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.
