The Honeymoon's Over

The past few weeks have been incredible for Joshua's therapy. We had one little set back with the flu, but Joshua recovered beautifully. Way better than ever before. Joshua's meeting his goals every time we turn around. He's tolerating oral stimulations, he tolerating undesirable textures, and trying new foods. We are still working on taking in more quantities of approved foods. 

One drawback to all this progress, Joshua's getting bored. He's easily distracted in therapy, not wanting to stay in his seat, asking me and his nurse questions. Now comes the underlying behavior issues. 

...The honeymoon's over. He loves his therapist, he still enjoys pleasing her and they make each other laugh, but the pressure on him now. Here comes the real work. We've had three and a half years of molding his eating behaviors into some very bad habits. Much of it is attributed to his health, but all the same the habits have been formed. 

58 ml/hr and Holding

Well, we've made it to 58. Just 12 measly mls/hr to go. Unfortunately, the last week has been difficult for Joshua. He recovered from the flu just to get double ear infections. The combination of illnesses, antibiotics and rate push on his feeds has left him very bloated and uncomfortable. We've started a g-button administered antibiotic to combat any possible bacterial overgrowth. I've also raised the amount of oil of oregano. Hopefully one week of this regimen will have us back to where we were. Joshua is feeling much more like himself. It's always heart wrenching to see your child sick and miserable. Please remember us in your prayers... still have our sights on 70!

70 mls/hr

There it is. 

Our goal. 

Our prayer. 

If Joshua can make it to 70 mls/hr of formula over 16 hours each day without trouble, his G.I. is ready to pull out his central line. 

We were handed this wonderful news monday at a routine checkup. He's at 51 mls/hr today and with consistent progression, we're only looking at 2-3 months left of TPN. Incredible! Joshua's surgeon warned us long ago that it may take years and years before this would happen and I've always been prepared to take his TPN and central line on into his preteen years. 

God please continue to heal my baby's body. If his central line is gone, so many threats are eliminated from our day to day lives. 

70 mls/hr, here we come...

Easy Does It

Friday April 28, 2006, hours after my emergency C-section, the Pediatric Surgeon walked into the room. Or actually it was more like floated into the room. He was an angel sent from God. Of course, I was pretty doped up on morphine! At any rate, my son is alive today, I believe, because of this doctor.

He was a man small in stature with the kindest eyes. Dressed in green scrubs still wearing his paper hat he walked up to my bedside. After introducing himself, the first words I remember hearing were, "This is bad." 

Wow, three words no one ever wants to hear from a doctor's mouth. My head is still spinning from the previous 2-3 hours. He told us things would be a roller-coaster ride from here on out. We would take two steps forward, only to take one back, sometimes three. The surgeon instructed us we were to take baby steps for a long time. Progress would be slow, but don't get discouraged. And lastly, looking at me he says, "You are going to become a nurse."

Without even thinking, I nodded my head and said, "Yes, sir." I was going to do whatever it takes.

Well, the good doctor couldn't have been more correct. This has been the longest roller-coaster ride of my life. Just when things go well, something creeps up from behind and pulls the rug out from under us. But, time has taught me much about Joshua. I don't pretend to be confident, but no backward regression is always an opportune time to try to push him. Each good stretch gives us a chance to raise his rate and encourage more oral intake. We've had lots of set backs, and I know there will be more.

But today. Today something's working. Maybe it's the new formula. Maybe it's the oregano oil. Maybe it's just Joshua's growth. God only knows. Slowly, but surely we're moving forward. Today I raised the rate of his formula to 49 ml/hr over 16 hours. For Joshua this is amazing! Even more amazing, last week, Joshua ate beef stew! He also ate an entire tube of Gogurt (yogurt for kids) and said "Ummmm!" while he ate! Tears welled up in my eyes!

What a long way we've come since that stormy Friday night. Each step forward is a miracle and a blessing. Thank you God for my Sweet Joshua, he's taught me so much patience!

So Far, So Good

We had our second day of Eating Therapy today and Joshua really responded well. He seems to like is therapist and is willing to "work" for her. He hadn't had too much trouble eating the easy things, but now we're off to the tougher stuff. Joshua's condition limits his diet of course. His GI would love for him to eat lots of meats. That has been harder for us. He can do deli slices of turkey, but chicken and beef throw him a curve ball. Tomorrow we're working on chicken strips, with breading. Maybe something like meatloaf next week? Or stew. Stew sounds good!

At any rate, it's time to sit down with Joshua's Dietician & GI to see if his higher rate in feeds (we're at a whopping 47 ml/hr!) and increase in oral intake will bring about a decrease in TPN soon. It's what we've been praying for.

May I have some more chicken?

As I have mentioned before, during the course of Joshua's first years, I've realized just how much I took for granted with my first son, Caleb. You read the "What to Expect" books and you're watching and waiting for each precious milestone. He latched on and is nursing well, check. He slept all night, check. He pushes up during "tummy time", check. He sits for a long period of time, check. Begins baby food, check. Crawls, walks, talks, etc, etc... There's nothing on that list that prepares you for having a special needs child. If there was, it would look something like this... Ticket for emotional roller coaster ride, check. New found personal relationship with God, check. Graduation from course on time management, check. Put all of your own wants on back burner, check. Keen understanding of a growth chart, check. Nursing 101, check.

So, at any rate, the cute little "milestones" are just a sadistic reminder that your child is not normal! Joshua was nearly six months old when he came home from the NICU for the first time. He wasn't even close to rolling over. Being on his stomach was painful and lasted all but five minutes. He still required support when sitting on his 1st birthday. Not long after he turned one tides began turning. We had a great stretch of good health and he made leaps and bounds. Finally, by 18 months Joshua was walking and saying a handful of words.

Much to our dismay, very few things made it to his mouth. At this stage Joshua would suck on his paci and drink a very small amount of water. Food didn't stand a chance. Someone made the mistake of telling us that there is a school of thought out there on force feeding. Some equate it to rape. The forcing of something unwanted into the child's body. Yah, you can imagine the impact that had on me pushing the subject. Our feeding exercises came to a halt! So much ground was lost in the months following. 

It wasn't until Joshua's GI told me that our only hope for Joshua at this point is to increase his oral intake. Here we go, I'm thinking! So, we start feeding therapy. In the beginning it was a group setting, hoping positive peer pressure would come into play. Kids like Joshua could care less what "everyone else" is doing. That was scrapped and we quickly moved on to individual sessions. In six weeks we made quite a bit of progress. 

We've learned something along the way that is quite profound. If kids aren't eating, they do not develop their speech. I never would have associated the two. But, it made sense. They acquire tongue motor skills by moving food around their mouth that will aide in their pronunciation. Well, as you might expect, with the increase in oral intake, Joshua began to talk. And talk. And talk. And the boy hasn't stopped! At 3, Joshua Blaine Southern finally caught up to all his precious milestones, including being on the growth chart curve!

So, here we are today, not at all where we hope to one day be, but a whole lot closer! Joshua's feeling great on average. We've seem to got a good mix of the right formula, right meds and our latest discovery, oil of oregano. What a difference! He's eating! Tonight he was given a small portion of my mom's homemade chicken pot pie. He ate the chicken out of it like it was going out of style. He asked for seconds, I smiled. He asked for thirds, you gotta be kidding me? Fourths, Fifths! He must have eaten a total of 1 cup of chicken when all was said and done. I never thought hearing "May I have some more chicken?" would bring me to tears. You don't find that in any book...

The Frustration I Feel

There are times I think back to when things were much simpler. Back before Joshua was born. I had no clue as to what it was like to feel the stress and frustration over your helpless child like I've now grown to know so well. I wish I could grab that girl when she just had one child and shake her. Parenting is so easy when everyone's healthy. I hope, if I can get anything across to anybody, it's that. Your babies are so precious. Don't take for granted what you have. You can read all the "What to Expect" books you want, but when it comes down to it, all you need to know is: have patience, be consistent and create special memories on purpose. 

I have to keep reminding myself of this. I'm at a place now where my "duties" as Joshua's primary caretaker sometimes interfere with my mothering. It's so easy to become resentful and overwhelmed, forcing everyone else in the house to pay the price. I can only be angry with myself for that.  It can be so hard to be as organized and productive as I need to be, to properly take care of Joshua without loosing the sweet, soft and easy-going mom that my kids need. I want to be such a different woman. My family needs it. I just don't know how not to get so wrapped up in everything being a certain way. Of course nothing in my life goes as I think it should. My house doesn't reflect it, that's for sure. That's one more thing that prevents my sanity. It drives me crazy when things are out of place. I want it all to be perfect, but I just don't have it in me at the end of the day to do it all. I'm all ready sleep deprived as it is. 

This is such a short time in our lives and I know in my heart that I need to just get over myself. The good Lord has gotten me this far, only He can take on my burdens. I just have to hand them over. So, Lord, please give me grace and tolerance and the ability to take the best care possible of Joshua and love my children as sweetly and patiently as I can.

I'm reminded of a poem I once read about dirty handprints and cherishing these little messes now, because it's only a matter of time...