Tough To Swallow

Today was an interesting day here at the Musing's Mansion. After a bunch of discussion on the benefits and many false starts at getting one done, Tommy finally had a rehab swallow study.

To catch you up, if you need it, basically because of his craniofacial issues Tommy's ability/ease of swallowing things in his mouth has long been questioned and worried over. He had been working at school with his speech therapist getting small tastes of certain foods (yogurt, pudding, things of that consistency).

Daddy was left out of the actual exam, because I had to stay in the waiting room with Matty, but it wasn't to long before I got to go back and watch the video of the x-ray as he was fed. After a couple of nice successful swallows, there it was: one very bad, swallow that gulped the barium laced pudding down into his wind pipe.

Tommy had aspirated. He didn't even try to clear his windpipe or cough as the stuff went down. That is not good. So he officially has an uncoordinated/unsafe swallow. All is not lost to be sure. While the result was a disappointment, it isn't the end, it doesn't mean he can never eat it just means we need to back it off and work a little slower and perhaps train his swallow.

Perhaps the bad news is that the little goon is a silent aspirator. That might not be the best thing. But knowing he does aspirate perhaps alot of the times he has been "sick" have been aspiration related and not a real sickness.

It's another piece of the Tommy puzzle in place, another part of the present unwrapped, but I am not sure I liked the gift. So now we go back to square one and we work in little tiny tastes that he won't have to swallow and we build from there.

Meanwhile this evening Matty mowed down Cheerios like they were going out of style, ate a jar and a half of baby food, had a cookie, and his first piece of cooked pasta. It comes so easy for the little booger and Tommy has to work so hard at everything. Sometimes I wonder if big brother gets a little jealous of everything little brother can do already. I wonder if Tommy even understands jealousy.

I have to think he does. The other night his old care attendant came by with her daughter and baby daddy. Now, before the baby daddy, his care attendant was all his. Well he got us to give him to her and he climbed in her lap and stared her baby daddy down like "Whatchu gonna do about it...?" It was so cute, he knew exactly who to look at with a big old turd-eatin' grin plastered on his face like he was saying "Haha I showed you."


So the Church has patron saints for everything right, well, St. Blaise is the closest I can find for Tommy's issue. Anyone else got another...??

Saint Blaise, pray for us that we may not suffer from illnesses of the throat and pray that all who are suffering be healed by God's love. Amen.

Questions Answered

Holoprosencephaly...Say that three times fast, I'll wait for you to give it a try. I'd never heard that one before, I used to read the dictionary for fun, but this was a new one on me. Tommy was without a diagnosis for nearly a year and a half before he finally had an MRI. The MRI finally showed us the root cause of Tommy's issues.

Holoprosencephaly....What it means is that when he was still a fetus, Tommy's brain didn't do the things it was supposed to do. His brain didn't separate as it formed into two distinct hemispheres and didn't produce much of a corpus callosum.

So his brain is without the piece which aids in the left/right communication of brain activity. Not to mention as I said he doesn't have separate hemispheres.

Before we had this diagnosis we chased down several rabbit trails of other ideas, none of which bore fruit. They only served to pull us away from where we should have been looking. If I sound a little bitter about this I suppose I am. A CAT scan of Tommy's brain showed some abnormalities to the neonatalogists, but they didn't pursue them. His geneticist proposed a syndrome she thought would fit and we loped along the trail chasing those down. The blood results proved that wrong.

I guess my frustration comes from the fact that we didn't get into see a neurologist for 18 months because no one thought Tommy's brain abnormalities were worth referring.

When I get aggravated about it, I try and step back and pray. Just letting God remind me that He has known all along what we need to know and when. It seems very much like God is unfolding the many mysteries of Tommy slowly as we can accept and deal with them. This is at once a comforting and terrifying thought. Comforting for obvious reasons.

Terrifying because I think of the fact that we didn't know about two various aspects of Tommy's situation, either one of which could have been the death of him, until he was 13 months old. That's when we found out Tommy has two separate endocrinological issues, either of which, if untreated could be fatal. Yet we had carried on blissfully unaware and he had been kept perfectly safe.

I truly know as I have said many times before Tommy has a very special purpose here on earth. I don't know what it is exactly, but his survival shows he has something to do.

Every time I look at him I think to myself, he shouldn't even be here. Most babies conceived with this problem are miscarried or stillborn.

"The condition can be mild or severe. According to the National Institute of Neurological Disorders and Stroke (NINDS), "in most cases of holoprosencephaly, the malformations are so severe that babies die before birth.
When the embryo's forebrain does not divide to form bilateral cerebral hemispheres (the left and right halves of the brain), it causes defects in the development of the face and in brain structure and function."
 Wikipedia

So many things seem to have conspired against Tommy and yet he soldiers on. He just daily accepts his trials and keeps such a happy disposition. It is hard to be unhappy with Tommy around.

I remember one night after Tommy was born, while he was still in the hospital I was praying my rosary, the mysteries of the day were the sorrowful mysteries. While reflecting on Jesus carrying his cross, I realized God was telling me that this was Tommy's cross to bear and just like Jesus had help carrying His cross, so should I help Tommy with his.

When the Hand of God comes down on Tommy and gives him his miracle, I hope he doesn't lose his personality to his new brain...Lord I would rather he stay this way, than be healed and be a surly, grouchy kid.

Happy Lent everyone. I hope you all have a glorious season of repentance....

Doctors, Doctors and More Doctors

From the first day of Tommy's life it seems as if we have had an endless stream of doctors. It seems like every new doctor we meet tells us how we should see one specialist or another. Traci and I refer to this vast network of doctor's as Tommy's village.

The first specialist who came into our lives has always held a sort of primacy of place for us. If for no other reason than she was the first who looked at Tommy and said "I can fix that, for ya," while that isn't a direct quote it might as well have been.

I was sitting with Tommy in the Neonatal ICU in Spokane, when we first met Dr. P. I had been told she would likely come by to consult either that afternoon or in the morning. Remember it was me and Tommy against the world at this point still, his momma was still stuck down in Moscow and our assorted families were all en route.

I remember sitting alone in that quiet space clutching my rosary, looking at my firstborn, wondering what had happened, how it could be fixed, why it had happened. Dr. P came in and introduced herself, took a look at Tommy and started telling me exactly how we could fix the cleft and what sort of time frame we were looking at for the various surgeries. I remember thinking, "She can fix him, and make his face whole, how awesome is she".

I'm pretty sure I even called Traci using a few precious seconds of my cell phones rapidly dwindling battery and told her, "I met the plastic surgeon and she doesn't care about the other stuff going on. She says she can fix Tommy's face."

Over time and several surgeries, she has done just that. Tommy has one upper lip and palate, where he used to have three. We have heard lots of people tell us lots of things about Dr. P, but never has a single one of them been bad. She is an amazing lady who frequently takes trips to developing countries and does cleft repairs for the poor in those nations.

Traci and I often say that God probably had to make Tommy the way he did, because had he been born without the cleft and with his other parts being like they should, he would be too beautiful to look at. Plus it has given us a window into so many things. Dr. P's deft touch as she has repaired his upper lip, his nose and his palate has been amazing.

I almost wrote noses in that last paragraph. One thing we found out after one of Tommy's surgeries is that his body tried to make two noses. It was beneficial for Dr. P as she was able to use them to her advantage in that surgery.

When I look at old pictures of Tommy and see that wide cleft smile, sometimes I get a little sad. Sometimes I miss it. I know everyone looks at their babies and waits to see how they change over their first year or two. Traci and I got to see ours change over a few hours. We would get to the hospital for surgery and get everything squared away, sending our little man off into the capable hands of the hospital staff, then we would go eat breakfast and wait. After a few hours we could go see him in recovery, the first time we got to see him with a whole upper lip was amazing. Every surgery since has had a sort of "let's look at the new Tommy, feel to it". 

If you have the means or the inclination or are looking for a tax write-off. Give Operation Smile a look. They do amazing things.