Tuesday, January 31, 2012

Our new nice dietician :)

I have been considering driving to Dallas to find a dietitian who would support us in home blending (making real food to go through Dominic's g-button).  As I said in my last post, I found one in Arizona who specializes in it.  But thankfully I spoke with a dietitian yesterday at Cooks that was kind, who explained things to me, and who took time to talk with me.  I feel so relieved that I am getting help.

Turns out home blending is the exception to the rule.  It seems only to make sense to me that real people should eat real food, even if they have to get that food through a g-button, so I don't understand this.  Every blog I read from families who do it say how their child just got so much better when they started home blending, they got more energy, their moods improved, they started doing better in therapy.  To me this is a real "duh."  We were not made to eat micro nutrients in the form of white powder carefully prepared in some lab.  We're made to eat food... all kinds of different food.  So, I totally don't get why this is the exception rather than the rule.  This is just another example of how children and adults with special needs are treated like throw away citizens.  Lets give them enough to survive, but we don't care enough to empower families to make the absolute best life for them.  After all, they are not productive citizens.  You know, people aren't stupid.  If you show someone, even someone with no education, how to give their child real food, they could do it.  It just makes me feel sick to think of how the moms who speak no english must feel when they bring their special needs child into to see the "experts" who no doubt, at least sometimes, think they are not smart enough to handle more than mixing some powder with water.  If they treat me like an idiot, someone with letters behind my name who worked at that same hospital for 6 years, I can only imagine how they treat the immigrant who speaks no english.  OK, off my soap box...

The dietitian I spoke with yesterday gave me many resources to start to learn about home blending, she explained to me the best choices for a supplement for his brain health, and she explained to me which foods would be okay for him given his sucrase deficiency.  I am so relieved to have found someone who I can feel like part of the team with.  So, today is the day.  I will give him his first food today, green beans!  He can't taste anything by mouth for another 2 weeks (until his incision is completely healed) but maybe he might taste a little burp up of the food.  I'll let you know how it goes!

Monday, January 30, 2012

Thanks, but...

How do you say you are so thankful for something while at the same time being so tired of that same thing?  I consider it such a grace given by God to be able to pump and feed Dominic exclusively breastmilk from birth, especially seeing as he takes zero by mouth.  I know this is such a gift... But can I just say how tired I am of it?  It's like I praise God with one side of my mouth while the other side complains.  Thank you, but I am so tired of pumping.  Thank you, but it never stops hurting.  Thank you because his little brain needs it, but I just want myself back.  Thank you, wish I could make a little more.  I am thankful for God's mercy... surely he pardons his unthankful daughter, right?

And on the topic I am obsessed with food.  Not for me, but for him.  I have just decided that until I can find a dietician that will be more helpful to me, I will learn everything there is to know about making my own homemade food that goes through his g-button.  I have been a Goggle-crazy momma.  I have e-mailed a dietician in Arizona asking if she would do a phone consultation.  We have turned in our medical discount form for our Vitamix.  I have found all I can on low sucrose veggies.  I am determined that he will eat real food. 

I don't really know how to end this because you see our nurse didn't come last night so I'm running on about 1 hour total of sleep.  Our day nurse just arrived so off to bed for me for a bit.

In Jesus and Mary,

Thursday, January 26, 2012

GI Doc and Dietician...I'll try to be nice...

Maybe I should wait to post this.  Maybe my frusteration will wear off after a few days.  But then again, I am inviting you on the ride to this new life with Baby D, so a watered down version of anything wouldn't exactly be fair, now would it?

About a month ago we got a call giving us the results of a biopsy D had done of his intestines.  The nurse told us he has sucrase deficiency.  That's it.  Sucrase defieciency.  Okay, what's that?  So, after 4 long weeks of trying to find something on the internet, and crazy person calling the nurse and dietician, our appointment finally came around today.  Sucrase is an enzyme that your intestines secretes that breaks down the sugar sucrose.  If you lack the enzyme that breaks it down, it causes chronic diarrhea as well as other problems.  In these past 4 weeks I have had all the sucrose taken out of Dominic's meds and supposidly breast milk doesn't have it in it.  His diarrhea continues though.  So, we are trying a medicine called Sucraid that replaced the lacking enzyme.  Only one company makes it, and since the demand is low due to the relativly rare incidence of this disorder, they have complete monopoly over it.  One bottle costs $6,000.00.  That was not a type-o.  Remember how I was griping about the eczema lotion that cost $500?  That doesn't sound too bad now, ehh?  So, we put in an application to get approved to take it.  Today we were told Dominic is the youngest person in their clinic to ever take it, so he's a sort of experiment.  Awesome.

After we saw the doc, we went in to see the dietician.  I have been being told for months now that at his 6 month check up we would discuss giving him blenderized solid food through his g-button.  I have been patient.  After arguing about which fat to supplemet him on, a lot of eye rolling and head holding by the dietician, we agreed on canola oil.  Then on to the amount he is to be fed.  Again, another argument.  Sorry if I don't feel comfortable when you tell me you reviewed his chart on Monday, since you just got him confused with another kid.  Check it again please.  Please.  Finally, she reluctantly did.  She seemed to be done with our visit when I said "and what about food?"  She looked at me in a "are you serious woman" kind of way and said "oh I don't think the doctor will want to do that."  I just stared at her, said nothing.  She then got up and went and asked him.  By george, he said it was okay, so again, another bit of attitude and we have a plan for a few weeks.  He can not have any starchy or sweet veggies, so we are left with spinach, green beans, brocolli, and cauliflower.  I only got the last two because I kept naming veggies until she agreed on some.

What is it with the dieticians at Cooks?  I'm sorry, I know I should stop here, but I just can't.  I am being very nice in the above paragraph.  It got so bad I was about 1 second away from standing up and walking out.  It takes alot for me to get mad.  Having to advocate is one thing, but being treated like a crazy mom who bucks the system is another.  We are not in middle school, save the eye rolling.  You know what, I will make your professional career a living hell because I will not be a good little patient and feed my kid canned food.  He is a person and people are meant to eat real food, not some hypoallergienic crap produced by pharmaceutical companies.  I will just save her the trouble and switch dieticians now. The last thing I need in my life is some bitchy lady giving me a hard time about what food I can and can not give to my kid.  Last I checked, I'm his mom. 

Sorry for this, I'm just so mad!  I will stop here because if not I will regret it.


Metabolic Geneticist

Yesterday was our long-awaited appointment with the metabolic geneticist.  Our Neurologist wanted us to see her because he thinks that Dominic has some sort of mitochondrial DNA abnormality, and she is the expert in that field.  She said that normally kids who have some sort of metabolic or mitochondrial DNA problem do not have any outward physical manifestations.  Dominic on the other hand does, with his dysmorphic features.  I asked her about the syndrome I found the other night and she quickly shot that down.  Phew.

After working on his case, she was stumped.  He tends to do that to doctors.  His blood work that would point either to or away from a metabolic or mitochondrial disorder is all over the charts.  He'll have two that suggest it, then a normal one, then two going the other way.  She said she feels convinced that his problem lie in his genes, not in the mitochondria.  She did say for us to go ahead and start a mitochondrial health cocktail consisting of two supplements that these organelles need to work, and that would be our kind of last step in seeing if there is any improvement.

OK, let me backtrack a bit.  Get your high school science hats on for a sec.  The mitochondria are the largest organelles in the cell.  Their job is to take chemicals from broken down food and turn it into energy the body can use, or ATP.  In order for this to happen though, the mitochondria need certain substances to work.  This is why we are going to try him on the supplements for a month.  If anything changes, we know the mitochondria are affected, if not then we stop there with the worry over the mitochondria.

She said there are more test to be done involving mitochondria but almost all of the time these tests are inconclusive, resulting in a long, expensive session of chasing your tail.  She said she is more than happy to proceed with these if we want but her clinical gut says he is in fact "genetic," not "metabolic."  She is interested to look up which genes carry some of his problems (in particular the sucrase enzyme) and perhaps have a more in depth study done on the genes surrounding that one.  She thinks maybe a chunk of genes just got knocked out during development, resulting in this modge podge of problems that don't fit nicely into any one diagnosis or syndrome.

All in all, it was a good visit.  She spent about 45 minutes with us, was so kind and patient, and even walked us to the check out desk when we were done.  My friend brings her son to her and she always told me how amazing she was.  She was right, I love her.

Mike and I have decided that while it would be nice to know what Dominic's syndrome is, it doesn't really matter.  It only matters in as much as a possible treatment to curve the delayed mylenation goes.  The only other thing a name is good for is opening up doors to certain organizations.  For instance a child with Down Syndrome can qualify for certain programs simply because of the diagnosis.  Different foundations cater to different conditions.  However, we do not want to continue to put him through test after test, biopsy after biopsy for a name.  The name may do more harm than not anyway because then the Google monster will consume me and perhaps my hopes might be squashed.

Under Her Mantle,

Happy man!

Our date to the hospital Starbucks!

He loves him some Daddy time!

Tuesday, January 24, 2012

A Bad Idea

Last night I did a first... I Googled different genetic disorders.  Big mistake.  I found one that matched a lot of Dominic's features.  Then I remembered in the NICU when the geneticist saw him for the first time she thought he had a syndrome that affected the 4th chromosome.  The syndrome I found was from a deletion of the p arm of the 4th chromosome.  The features of the kids I found looked so similar to Dominic when he was first born, it was freaky.  Then I started reading the prognosis for these kids... bad idea.

So I know he doesn't have this particular disorder (because two chromosome studies say so), but boy are there so many similarities.  Dominic has all of the features of this particular disorder, plus many, many more.  I realized last night why all of the doctors say he is so confusing, like he is a modge podge of several different syndromes.  This syndrome has like 5 traits, all of which Dominic has, plus about 10 additional ones.

After an hour or so of reading about this, and getting totally upset, I stopped.  Like I said, the prognosis for these kids is not good.  I realized last night that I don't really want to know the name of what Dominic has.  I have so much hope for him right now.  I see him as a toddler, a child, a teenager, an adult.  I don't really want to know if his disorder has a short life span.  I'd rather keep my hope.  I don't want to "prepare" for a grim future.  I want to look at that sweet, fat little man and hope for a long, happy, meaningful life.

Saturday, January 21, 2012

Successful surgery and back home

Baby D is back home after his most recent surgery and recovery.  The general surgeon who performed the test on his rectal sphincter said that the sphincter was in fact in the correct position so he does not need reconstructive surgery.  The worry was that the sphincter (the round band of muscles that make a person continent) was in the wrong place, thus making it impossible for Dominic to gain continence as he gets older, and perhaps causing the constant stooling and skin break down he is having.  Luckily the location is correct, so we don't have to worry about the series of reconstructive surgeries we were possibly facing.  The surgeon did say to file in the back of our minds the possibility of a colostomy bag in the future, if we are unable to get his diarrhea and skin break down under control, but luckily that is years ahead of us.

Then the plastic surgeon came out and said the repair went beautifully, as well as he could have hoped.  He said Dominic did well under anesthesia and the repair was sutured together with disolvable stitches so no further trauma to the mouth was necessary.  After the surgery, while he was still sedated, he had a follow up MRI of the brain. 

The MRI showed increased ventricle size. There are 4 ventricles in the brain, which are places that the cerebrospinal fluid flow through. The doctor didn't say which ventricle, and I didn't think to ask, but I'm assuming the 4th ventricles are the ones he is talking about.  The 4th ventricles lie right in the middle of the brain, kind of like two small mango-shaped spaces on either side of the brain.  The reason for this could be one of two things: #1 it could be that the head is growing but the brain is not, causing the ventricles to appear bigger.  The other possibility, #2, is that the body is producing more CSF (cerebrospinal fluid) than it should, causing increased pressure on the brain.  From the MRI it was not an emergency to check which one of these two is the case at this point, so we will have a follow up MRI in two weeks, right before we see the neurologist, to check for possible increase in size of the ventricles.  It also showed decreased mylenation, which we already know.

The stay in the PICU (pediatric ICU) was fine... I was so anxious about "giving up control" and having to willfully be charitable to the nurses.  If you ever read this blog, you know that is one of my big struggles.  I was hoping to be a good advocate, while at the same time being kind and flexible.  God knew what we needed because the nurse that first day was just wonderful.  She was so caring and considerate, completely putting us at ease.  Then that night we saw one of our friends (the mom of the 20 year old boy I have talked about- the one that gives me hope for Dominic), and by goodness, turns out she was our nurse!  So, I was able to fall asleep knowing he was in good hands... she has been taking care of a child just like Dominic for 20 years.

He had good pain control that first day and night with IV morphine and the next day (discharge day) he was switched to oral Lortab, which he is on at home.  His pain seems to be well controlled... he sleeping peacefully beside me.

Yesterday before we left we had a meeting with the Palliative Care Team, which if you remember, is comprised of a physician, a Nurse Practitioner, a Chaplain, and a Social Worker.  They serve as a buffer for families with "medically fragile and technology dependent" children.  I hate how that sounds.  Technology dependent.  It just reminds me that 50 years ago a child like Dominic would not have survived.  The meeting went really well, we voiced our good, bad, triumphs, and concerns.  They are so considerate and listen so well.  They take action on things that can be fixed and really advocate for the child.  We are so fortunate to have them.

We are home now and Dominic is resting well.  You can tell he is not feeling great because he just wants to be held, but he is not crying, which is a good sign.  We are so fortunate for our little guy; we sure love him.

Thankful to Our Lord,

Thursday, January 19, 2012

Submucous cleft palate repair

Sweet Baby D will be having another surgery today, this time to repair his submucous cleft palate.  That is different than a regular cheft palate, you know the kind where there is a split in the top gums and top lip.  In the kind he has, the skin all grew correctly, just the inside bone structures didn't close.  So, there is a hole in the hard palate (the hard part of the roof of your mouth) but the hole is covered by skin, so it wasn't diagnosed in the NICU.  Actually it wasn't found by a doctor at all, it was found by two of my co-workers that are speech therapists.  To whom I am eternally grateful by the way!  If this had not been found, he could have grown up with a significant speech impairment, which according to the plastic surgeon, is almost impossible to overcome once they pass a certain age, even with a repair.  The surgeon said the muscles that form the soft palate are joined together instead of joining to the hard palate like they should.  This prevents the soft palate from closing off the airway through the nose when you talk, and often presents as someone who has a very nasal voice and inability to say certain sounds.  *****Disclaimer***** I am not a speech therapist, so all you speechies out there, correct me if I'm wrong!  This is just my understanding!*****

Anywho, gotta run... lots to prepare for before we leave.  We love you and trust you Lord Jesus!

In Mary's Mantle,

Monday, January 16, 2012

Adapted CrossFit

OK, so Mike's most favorite hobby, besides being with me- he, he, is doing CrossFit and learning about CrossFit.  CrossFit is a type of exercise that combines gymnastics, endurance running and olympic weight lifting.  At our house, cars are banned from the garage... that is the CrossFit gym.  And my brother just built a new storage shed in the back to get all of those pesky things like lawn equipment and tools out of the garage gym.  Why am I talking about this?  Let me tell you.  Last night after the big kids went to bed Mike and I watched this video about this high school that adopted CrossFit as their PE.  It featured a teenage girl with cerebral palsy who did awesome in this gym class with adapted equipment and moves.  It was hard for me to watch because this wasn't a patient... this was my kid in 16 years.  In case you don't know what cerebral palsy is, it is a condition that affects the motor movement and coordination of the person, normally due to some sort of hypoxic injury around the time of birth.  Think about trying to reach out to pick up a glass of water from a table.  A person with CP would find this very difficult because they have to coordinate keeping their balance while making just that one arm move, steady the rest of the their body with the other arm by keeping it in weight bearing on the chair, determine how hard to grasp the cup, balance their body that is affected by tone to make sure they don't fall out of the chair, and keep the cup steady so the water doesn't spill.  One of Dominic's diagnoses is cerebral palsy, or CP.  He is not severe, but it is still there, black and white on paper from a physicians consultation.

As a pediatric PT I have treated lots and lots of kiddo's with CP.  The one that sticks out the most was a sweet little boy named David.  I was helping David learn how to do all sorts of things, with the final goal of walking.  He had this reverse walker (it wrapped around the back of him instead of the front so it was very stable) that he would use and he would literally run and pick his legs up and let it roll.  It was always a fight to make him walk, not run and roll.  The tone in his arms was enough that he could hold himself up on the walker while he picked his legs up from the floor and rolled.  Come to think of it now though, I bet that was alot of fun.  No wonder he hated walking with me... what kid wouldn't want to roll around like that?

I'm telling you this for a couple of reasons.  One, I have this stigma attached to this diagnosis from years of treating kids with it.  They can be from functional with just some difficulty with movement all the way to completely unable to do any purposeful movement at all.  I have this face attached to this diagnosis, this body I see contorted like a pretzel, this wheelchair that requires a special seating system due to the extreme contractures and malformations of the body.  But I also have another picture of it and it looks like David.  Happy, mischievous, pestering big brother, "normal" kid who loves to roll on his walker.  And now Dominic.  Sweet, chubby little man who smiles with his whole face, not just his mouth.  Who likes to bury his face in my shirt to cuddle.  Who likes to be held in just the right way, who lights up when the noise of play from his siblings surrounds him.  God is for sure releasing me from all my past prejudices of treating kids with special needs.  You know, the fear you secretly feel that your own kid could ever be like this?  The tiredness you feel after a 45 minute session with them.  Being unable to imagine life with that kid... and not giving it much thought after he leaves the therapy gym.

OK, back full circle... last night the video with the girl with CP doing adapted CrossFit broke down some of those walls I have in my mind.  It gave me hope.  Who knows what Dominic will be able to do as he gets older, but I now know that whatever his functional level is, he will be able to CrossFit with his Daddy and brothers... just one of the boys in the gym.  Just when I feel stagnant, God continues to move me forward.  Giving me hope.  Nudging me to move on.  He is so good and faithful, even to me who is seldom faithful and mostly nonchalant towards Him.  Won't He ever tire of constantly getting my attention?  I don't think so.  After all, He paid a high price for me.

In Jesus and Mary,
CrossFit Daddy and Son snoozing

Mary reading my Magnificat

Dom loves being held by Mary... and she is very serious about he job!

Friday, January 13, 2012

Best doctor ever

Last night Anthony came and got in our bed, so this morning when I woke up to pump the noise woke him up.  Without his eyes even being open he said "mom, I was thinking about something..."  I said "ha, yeah, what was that?"  to which he responded "do you know how to download Angry Birds to your phone?"  So, there we go.  My 5 year, who still wants to come cuddle in bed with us at night is asking to do big boy things... like play a game on my phone.  Just seems strange, and sweet, all at the same time to me.

So, about yesterday.  I was nervous all day because the point of this doctors appointment was to ask the surgeon, who had already said no to this question, if he would re-consider doing Dom's testicle surgery at the same time as his cleft palate surgery next week.  I know I think I'm tough, but deep down inside I have never liked confrontation and it makes me crazy nervous.  Now, i ma getting better about advocating for him, and as I've said before I seem to take the defensive right away when we walk into a doctors office, but this was different.  I wasn't worried about battling with the nurse or dietitian over small stuff like weight and food... I was going to be talking to the doctor.  I still have this thing about being scared to talk to doctors sometimes.  I know it's silly, but there you go.

I was so relieved Mike was coming with me and he agreed to do the talking.  As it turns out, I had no reason to worry.  This surgeon is my new favorite doctor.  I love him.  He talked to us no less than 40 minutes... all about the test he will be doing, going over different scenarios depending on how the test comes out, talking about his experience vs the research vs all the different philosophies about when to take the testicles down.  He also talked to us about his inspiration: his deceased brother who had a traumatic brain injury at 3 years who lived for another 13 years despite what the doctors said.  He talked about how his brother couldn't do much, but how he was "there" and how he would play with him and do things big brothers do, like pester him.  Just hearing how much he loved him, and how his life with his brother was normal, despite the obvious fact that there was nothing "normal" about it, gave me so much hope.  He said he would sometimes get mad when he had to watch his brother, but how this was good, because they were just two boys being brothers... and brothers get mad at each other sometimes.  He said his life with him was normal... they would play, they would fight, they would do all those things boys do, just in a different way.  He also said how his brother is responsible for him becoming a surgeon.  His brother inspired him to do great things.  And because he grew up with a special needs child in the house, he has great empathy.  He listens.  He takes time to explain.  He sits patiently, not like he has anything else in the world to do than to talk about your child... his most important patient.  He said he knows what it's like.  I almost cried several times during his talking about his brother.  I was thinking "this is how I want my boys to talk about Dominic when they grow up."

So, the testicle surgery will be when Doiminic is between 8 and 12 months.  The research supports this and we are at peace with waiting.  And another thing, the doc said I need to seriously consider selling my home-made diaper cream, which Mike and I call "butt frosting" because it's so thick.  It works.  He said he would use it for his patients.  Hmmm, we'll see...

In the mantle of our Mother,

Thursday, January 12, 2012


So yesterday we went to the least important specialist ever... the dermatologist.  I say the least important because when you're dealing with keeping someone alive, a little eczema is the last thing on your radar.  But now, since he is medically stable, the eczema has become a bigger deal because it makes him so uncomfortable.  To demonstrate how much this has not been on our minds these past few months, we had no idea how long he had been having the eczema when the doctor asked. 

For the past few months I have been on a milk-free, soy-free diet because we thought that maybe these foods were causing his diarrhea and spitting up.  About a month or so ago I also went off of wheat, thinking this may be the culprit for the eczema.  But alas, nothing helped any of his symptoms so two days ago I went back to a regular diet.  And since I did, absolutely nothing has gotten worse... it is exactly the same.  I have lost so much weight eating a milk, soy, wheat-free diet (because all I could eat was meat and veggies) that my milk production was starting to dwindle.  So now I'm back eating regular foods and drinking good whole milk, in hopes that it can counter-act some of the calories I'm burning with pumping.  And boy, is it good!

So anyway, back to the dermatologist... he was the fastest doctor ever and after about 15 minutes of being in the building we were on our way out with a prescription for lotion for the eczema.  After dropping the script off at the pharmacy we received a call from a pharmacy tech saying "just wanted to let you know how much this prescription is before we filled it."  AFTER our discount card the doctor gave us the total was $469.  No, I did not type that wrong... four hundred and sixty nine dollars... AFTER the discount!  The price before the discount was $500.  For a bottle of lotion.  One bottle.  One.  Hmmm, maybe this sort of stuff is the reason for our outrageous healthcare costs!!!  Anyway, after giving her Dom's insurance information, our part came out to $0, which I liked the sound of better. 

Today we are going to see the surgeon who is performing the test on the rectal muscles during his cleft palate surgery next week.  We are going to try to talk him into doing the testicle surgery (to bring them down) at the same time.  Lets hope, hope, hope he will.  I hate the idea of Dominic having to have two anesthesia's and two recoveries.  I'll let you know how it goes.  Until then, be assured I will be enjoying my extra large glasses of milk.  And for you guys who say whole milk is too fattening, to that I say "what's the point of doing something if you don't do it all the way!"  This is the same reason I would NEVER drink a diet Coke... If you're gonna drink Coke, drink the good kind.  :)

In Jesus and Mary,

Tuesday, January 10, 2012

Geaux Tigers & Opthamology

So, yesterday sweet Baby D slept through enjoyed his first BCS title game.  Well, I can't really say he enjoyed it because he was rooting for LSU, who lost, but it was good company anyway ;).  We ventured out to my parents house to watch it and boy, what a beating to get everything loaded!  The other day my brother in law asked if it was getting easier bringing him places.  It's not so much that it's easier, it's just that we're more used to it.  But like I said the other day, we are determined to be normal and not stuck at home.  Last night we also brought our other three kids over, so it was crazy getting loaded in the car, but we did it!  It was raining when we came back home so we just put a trash bag over the vent and ran out!

Yesterday morning we had our Opthamology appointment.  Once again, it was raining, and of course I woke up late, so it was frantic from the start.  Our poor nurse fell coming down our stairs in the garage but thankfully she is okay.  The doctor said he still can't figure out a diagnosis but he knows the eyes are working and the signal is getting to the brain.  Just for some reason, the brain is not doing what it is suppose to with the signal.  He said as we approach 12 months he will prescribe glasses due to Dominic's extreme far-sightedness.  He said for kids like this, all we can do is take away any obstacles we can for them (for Dominic his far sightedness) and hope their brain matures and starts processing the visual input it is receiving.  Some kids who are not tracking or following seem to grow our of it, some don't... we just have to wait and see.

He also said to start patching again, which had fallen off our radar.  Before we were thinking his right eye was abnormal because it doesn't open all the way, but now the Doc is thinking it is actually his left eye that is abnormal (which doesn't always close all the way).  He says it looks like there is a piece missing from the middle bottom part of the lid, making the eye look like it is opened bigger.  That combined with the right eye not opening all the way makes the size difference look relatively large.  He sited the crease in the left eye looks more shallow than the right eye, so now he thinks it is actually the right eye that is normal.

I know Dominic can see at least dark and light because he flinches when the light is turned on.  But he doesn't seem to really see me when I talk to him.  Every now and then I think maybe he can see me, but the majority of the time his little eyes just bounce around or show very significant nystagmus (where they move to the side of the eye and start to shake).  He is following me with sound though!  I have seen several times where I will go to the side of him and talk and he turns his head towards me.  He doesn't seem to know I'm there when am quiet in front of him, but once I start talking he starts smiling and responds.

This morning we read "Unless you become like little children, you shall not enter the kingdom of God (Mt 18:3).  Only the childlike retain the child's gift of wonder...wonder is the wellspring of praise."  It is so encouraging how God continually reminds us that everything is going to be okay.  Like I have said before, we have so much to be thankful for, and part of that is the fact that Dominic will always be childlike.  He never has to loose his innocence like the rest of us.  He can dwell in the wonder of the creation God has made and in that way he will continually give praise to God all his life.  I hope he can find God's love in the most simple and ordinary things.  Mike and I will do our best, as I'm sure his siblings will, to protect his little heart from the hardness of this world so that he can be full and free to give of his innocent self a complete and total gift to God.

In Jesus and Mary,

Sunday, January 8, 2012

So tired of doctor offices... pulmonology

So every month we have an appointment with the pulmonologist for a check up, which includes a blood draw and two shots of a medication that makes it harder for Dominic to catch RSV, a virus that manifests as a cold for you and I but is very serious for small or fragile infants.  Everything checked out good.  She said she was happy with how he was doing, his milk intake was increased, which I am struggling to keep up with, hence the middle of the night pumping's again.  Every feeding it seems like we have *just enough* to feed him with just a tiny bit left over.  Lots of pressure! :o-

With each doctors visit, I become more and more on the defensive.  I don't think I could have understood this before D was born with our 3 healthy kids, but now I totally get it.  When we got to the waiting room it was very crowded, so I asked if we could stand in the open conference room (you know the one right next to us with the door open and light off), to which the receptionist said bluntly "no."  Okay... So then I said "he's not really supposed to be around alot of people, is there a place we can go?"  I was thinking maybe they had an open exam room, or maybe a "your baby has a trach and vent, please come sit here so he doesn't get sick by the other bagillion kids in here- room," but no such luck.  The receptionist simply said "no" and the other one turned around and said I could put a blanket over his head.  Thanks.  That's very helpful.  So, I just stood there for a second in shock and sighed a drawn out "okayyyy."  Wow, customer service, eh?  Now you have to remember that I know the patients with cystic fibrosis that come to the clinic are almost always colonized with some sort of difficult-to-treat bacteria.  Once they are admitted to the hospital, almost all of them go on "contact isolation" status.  I am fully aware that there may very well be some of those said patients in the waiting room, whom, because they are not admitted, are not on contact isolation status, but they are still affected by the same bacteria.  Hence my level of freaking-out-ness.

OK, I totally get the fact that the clinic is small.  I get there is not open exam rooms.  I get it.  I also understand that the open conference room that we are not allowed to stand in may be about to be occupied.  We are not the only ones with a medically fragile child, but come on, don't be such a... well, be nice about it anyway!  So at this point I was pretty hot, as was my nurse who was in total disbelief at what just happened.  Then the offending receptionist said in her best sarcastic overly nice voice for D to go down to the lab and get blood drawn.  So of course I requested the most experienced person in the lab so we didn't have to have a repeat of last time when the poor phlebotomist was fishing around in Dom's arm for*ever and his big SWAT daddy just about lost it on him.  I could see it in the lab tech's eyes... "oh, you're one of those moms."  Yep.  So, she decided a heel stick would suffice this time- ha!

So, we finally get called back into the clinic and Dom is measured wrong, again, and he grew like 6 inches (not really).  So the nurse re-did the measurement the MA took and from then on it was good.  It's just the process of getting from the front waiting room into see the nurse that is so... how should I put it... sucky.  As you can imagine I was just all bent out of shape by that time so when Dr. Dambro came in I told her all about my frustrations with this sucrase deficiency diagnosis and my eliminating so much from my diet when I don't think it is helping.  blah, blah, blah.  She was just sitting there with wide opened eyes, I'm sure thinking "this mom has lost it!"  but in true Dr. Dambro fashion she was cool as a cucumber and suggested I make an appointment with the dietitian and said I could go see an allergist if I really wanted to.  Yep, I do, thanks!

I don't want to always be so negative about doctors visits, so forgive me if you're thinking I need to stop the pitty party... I'm just trying to "keep it real" with y'all.  I so want to be one of those happy, sunny, bouncy moms who is always smiling and takes everything in stride, like my sweet sister in law, but I'm just not.  I'm grumpy, defensive, and snarled.  I'm sick and tired of doctors offices.  Just tired.  God has given me many, many graces with this all, but even though he is showering them down on me, only a few are sticking... the rest are just bouncing right off ;).

In Jesus and Mary,

Thursday, January 5, 2012

D's first day of school

Today we did another first in Dominic's life... we picked up his brothers from school.  So, this may not seem like a big deal, but for us it is another step towards normalicy.  The very act of loading him with all of his equipment is daunting, add that to breaking down his wheelchair (which is no easy task by the way) and feeding him in the car... you might as well just stay at home.  But, Iam determined to give him as normal of a life as possible, so these little outings are just going to have to happen.  Now don't get me wrong... this will NOT be an everday thing, but at least I know we CAN do it!  (By the way have I menioned my amazing family who normally does the dropping off and picking up,  whom without I would surely loose my mind?)

But today was made extra special by our dear friend, Father Pio Maria, who came for a visit and wanted to suprise the boys by coming with us to pick them up from school.  What a sight we were at the pick up spot at the elementay school!  It's not eveyday that you see a baby in a wheelhair with tubes coming out of his neck esorted by a Francician Friar!  I'm sure we'll be the talk of the PTA tomorrow! Ha!

One closer step to making our lives normal.  Now, for me to practice breaking the wheelchair down so it doesn't take 10 minutes to get it in the back of the van next time...

Fr. Pio Maria with the kids on the way to pick Anthony up

Tuesday, January 3, 2012

Geneticist & broken button

Our first Christmas with baby D as so much fun! He slept through all the excitement of his brothers and sister opening gifts, but I think he had fun anyway ;).  So, what's happened since I wrote last.. let's see...

Last week we went to the geneticist who told us that she has done every test available at this point.  She said she feels strongly though that his condition is some sort of genetic syndrome, but it may be the first of its kind, and until there are more sensitive tests, or more of the human genome mapped, there is not much more we can do.  She is however going to present his case at the annual meeting of geneticist's during a special session where physicians are able to present and discuss difficult cases. Thats right, the top geneticists in the country will be brain storming about our little man- yay!

The week before that a part of his g-button broke, so following instructions given to us in the hospital, My brother in law and I went to the ER to have it replaced (Mike was at work).  After about 2 1/2 hours we got tired of waiting so we sucked the broken piece out of the hole you put the feeding tube in with the ultra strong wall suction at the hospital.  At 4 1/2 hours the ER doc finally came in and said that the surgeon has to replace it and he was in surgery, so just call his office on Monday (this was Friday or Saturday night).  OK... would have been nice to know 4 1/2 hours ago! So, finally on Wednesday (Mike and my 9th wedding anniversary) we got an appt. to see the physicians assistant, who straight up pulled the whole button out then proceeded to tell me it was bleeding due to the "micro-tears" pulling it out causes. Wooo, was this mama hot.  I was about to micro-tear him!  So, after the new one was put in and we left, poor man was crying and sore for a few hours.  Must have been pretty bad micro-tears.  Geez, give me a break.

He is scheduled for surgery on January 19th to correct his cleft palate and for another test on his rectum,  He is also due to have is testicles brought down, but the urologist and the surgeon both want the other to do it. The surgeon will already be in the OR to do the rectum test but he says he won't do the testicle surgery because he officially saw him for his rectum, not his undescended testicles.  Soooo, I just made an appt with him before his surgery with the reason "examination for undescended testicles." I'll just take the excuse right way!  I am pushing for this b/c I don't want him to be exposed to anesthesia more than absolutely necessary, and because I don't want him to have to go through two recoveries. 

You know, a fellow "medical mama" told me shortly after he was born that I would find my "voice" as far as being his advocate goes.  Well, I done found it! I have learned that however genuinely people (doctors, nurses, etc) care, the fact remains that at the end of the day, they leave their work and go home to their life. He IS my life, and I never leave, so it is my job to be his voice.  I am not concerned about the surgeons schedules, or being timid and a "good patients mom,"I am concerned about what is best or Dominic.  And by George, if that means I annoy the nurses because that is the only way to get something done, then so be it... I'm officially "that" mom.  And in case you are not aware of what "that mom" means, it is those moms who make life difficult for the hospital staff.  Now I see that it is not that they are really mean, it's just that frequent contact with doctors, and office staff, and insurance companies, and supply companies puts you on the defensive.  You almost have to be politely aggressive to get something done. I have a million examples but I will spare you.

We have a pulmonology appt. Friday and that's all for this week.. then the rest of January is busy.  As for life outside of doctors offices, Dominic is such a sweet, happy little man  His smile is contagious.  He just loves hearing his brothers and sister play around him, and he is such a cuddle bug!  He is rolling from his back to his side and once he made it all the way over to his tummy (he was just MAD!). Here is a pic of Sweet Mary Grace loving on her baby Bubba: