Just a few recent pictures.

I think these were from Sunday when Timmy was sleeping. 

He had a slight fever, so he was cooling off a little. 

Still Improving

We are hoping that we are nearing the end of Timmy's illness. With the congestion, coughing and difficulty breathing, and the film from the x-ray they took, he said it was probably pneumonia that Timmy has been fighting off. He prescribed 1 antibiotic last week, and a second this past week that will both finish up tomorrow. The one will continue to work for 5 days after we stop giving it, so it should give him a good chance to get it licked for good.

The other kids still are battling sore throats and coughs, as well, so we are hoping that they can turn it around soon and we can kick the germs out of the house and let Timmy focus his energy more on growing than on fighting germs and illnesses. For a kid that wasn't supposed to be able to fight off a simple cold, we are very grateful that God has given him the strength to fight off pneumonia. Hopefully, I'll get back to posting pictures and 'normal' updates soon. We appreciate all of your prayers.

Making Slow Progress

Just a quick update: we had a follow up visit with the Dr. yesterday to check in on Timmy's congestion. He said the spots from the x-ray last week probably indicated pneumonia and since he still has been spiking fevers he wanted to put him on a second antibiotic. This happened several times while we were in the hospital - just to be sure they got all his bacteria. The Dr. is comfortable with how he is doing and improving, so we are glad for that.

He has sometimes been sleeping better, and sometimes been coughing most of the night. The first signs of getting better for Timmy are usually behavioral - looking around more, maybe even smiling and 'talking' (more of grunting, but his grunt-talking is way different from his just plain grunting). These have started to come back, so we are hopeful that the corner has been turned and he is on the mend. The antibiotics are helping, but also seem to be messing with his ability to digest well, so we are looking forward to them running their course and getting rid of leaking issues Timmy has had this past week. I am amazed by how well our 'compromised' baby is doing fighting off his respiratory illness. God has been so good through it all!

Getting some much needed rest

Timmy is still struggling with his cold! And that, folks, is a big blessing!

It may be 3 months ago, but it still seems so real and vivid to me. We were bringing Timmy home, glad, scared, hopeful, concerned, knowing we were doing the right thing, but questioning if we were up to the task and if it was good for Timmy. The words of the cardiologist and surgeon rung in our ears. "Your son might live months, he might live years." "It's not years." We didn't need the second comment, but we are glad it was shared anyway. We maintained our trust in God through those days and through coming home, but there was a darkness that hung over us. We communicated with the funeral home - planning on providing them business sooner rather than later. We prepared ourselves physically, spiritually and emotionally the best we could for what we knew was coming. The only hint we were given was that the end would probably come when he caught a cold or something similar. His little heart wouldn't be able to handle it and his body was so frail a simple illness would take his life.

And that is where the blessing comes in. Life has no guarantees and this illness could take his life. A bus could run me over as I walk across the street next Tuesday. But we have today. And today, my little fighter is fighting off a cold we were told he couldn't fight off. At times, it looks like he is losing, but most of the time, it appears he is winning. Especially when his sister puts him to sleep and the medications help keep him there to let his body fight. Right now - his pulse has slowed back down to normal, his temperature has gone down, and his breathing is just slightly more labored than normal. And we are blessed!

 

Still not feeling well

Timmy is still struggling with a cough and a slight fever. We would appreciate prayers as Friday is kind of that all important day to get things figured out before the weekend and options are a little more limited for medical care.

He has been pretty fussy the last 2 days (more fussy than when we saw the doctor on Wednesday morning) and it is hard to tell if he is getting worse, or just sounding worse. A call will go into the Doctor this morning, but wisdom is needed in how to explain his symptoms and what choice to make from there. On top of that, logistics of getting an x-ray or having other tests run gets fun sometimes. We'll update later when we find anything out. Thanks for praying.

Sleeping and Coughing

Thankfully, Timmy seems to be resting well these days. The VNA came on Monday and assured us his lungs were clear and today we say his regular Doctor in the office for a regularly scheduled appointment and heard the same thing. It is hard to see him struggling with a cold and cough, but he seems to be handling it fairly well. He still seems 'healthy,' it just takes a little more fight for him with a cold. We are glad to be able to be getting enough rest for now, and Timmy still has moments of smiling and playing despite feeling so bad. Even in this, we feel blessed.

Not a super morning

Well, after a lean night's sleep due to a power outage from about 10:00 to 4:00, and having to juggle the things that needed attention without power, we also have a little boy with a fever and elevated heart rate. The elevated heart rate is probably due to the fever - his body is fighting something, and he sounds a little more congested this morning. The cardiologist told us he was in good shape to fight off a cold, but we are still concerned for Timmy as he fights this illness.

Jen will call the VNA to see if they can send someone by to check in on him today, and he already has an appointment with his regular Dr. on Wednesday, so we should have plenty of good input, but we and he will need added strength for a few days until we get over this hump. Prayers, as always, are appreciated.

Just having a snack

When he is being fed through his g-tube, it is recommended to keep him 'sitting' up at a 30 degree angle or so, so here he is propped up on pillows. The oxygen is on today, on and off, as his breathing has been a little more rapid, even if his oxygen sats were staying high enough. He has had a low grade fever off and on, so we are watching him for any new symptoms. So far he has been fine and still his normal smiling self.

Last night was a decent night of sleep for most of us in the house, for which we are thankful. There are still plenty of coughs and sniffles going around the house, but hopefully we are on the mend from the illnesses. Time will tell. 

Quick Update Before Bed

Several of us have been struck with seasonal coughs, congestion, fevers, and at least one case of vomiting over the last 3 or 4 days. Most are improving and getting better, but Timmy is starting to have more congestion and is coughing and spitting up more. This makes for rough nights with less than our normal sleep, so prayers are appreciated. He still smiles a lot (even while sick) and is doing well, he just doesn't sleep well this way. His cardiologist just says it will take him longer to fight off any illness he gets, but we are hoping he manages to fight this one off quickly.

Plugging Along

Timmy doesn't like hiccoughs. You can probably tell from the face he is making. :) But he makes several different faces over the course of just a minute or two.

Looking bored:

Almost smiling to see daddy nearby. (But not too close as I have a sore throat) 

To normal Timmy face - and arms moving all over.

Timmy's few good nights of sleep have faded into the old normal of waking several times through the night and being fussy. Hopefully, we'll figure out why soon and be able to make an adjustment somewhere to help us all get some rest. In the mean time, we are incredibly blessed that he continues to do well for the most part and that he is still growing.

There are a few of us that are sick in the house, so he may be fighting something like some of us are. A fever or two, some sore throats, some runny noses and congestion. I guess the up and down of the weather isn't helping us out any, but we have had a supremely healthy winter so far, and are grateful that we have missed so much of what has gone around. We're just praying things will pass quickly and Timmy doesn't get something that he has to fight. The extra energy he has from being healthy right now is what is enabling him to grow. Every extra fight a CHD (Congenital Heart Disease) patient has to deal with just throws everything else off (digestion, breathing, oxygen levels, ...).

Sometimes, it still feels like we are living under the cloud we came home under. But slowly, that cloud seems to be moving off on the horizon. It is a slow process to go from "Your son will probably just live a few months," to the relative health he is enjoying now which says he may have years or decades before him. Only God knows, but we are glad to be in the circumstances we now find ourselves in.

Many things to give thanks for!

I'm getting used to seeing my boy without tubes and wires. With the adjusted feed schedule, he is only connected to the feed pump for 3 1/2 hour periods during the day (between 8 am and 7 pm). With his oxygen sats staying in the upper 70s and lower 80s, we only put the canula in at night. He is becoming much more mobile these days. :)

On top of that, God continues to provide for our needs, in advance. I can't tell you that we haven't spent more personal funds through the past 4 or 5 months - because I know we have. We have splurged on some items to make things easier around the house. (I'm thinking in particular about our new living room bed, but there have been other smaller things) And even for the big purchase of a second bed for us, God provided an insurance settlement for an accident in our car that covered all I needed to fix the car and enough for the bed. We spent extra money on gas and food for a few months, but much of that was covered by the generosity of friends and family. And this week, we get a card out of the blue from the Falconer Wrestling Boosters because they chose our family to be the beneficiaries of a fundraiser they had during a wrestling tournament. (http://www.post-journal.com/sports/local-sports/2017/01/top-seeds-all-reach-semifinals-at-patrick-j-morales-tournament/) I suppose it helped that the tournament was in the paper the same day an article on Robbie and Timmy was on the front page of the local paper.

Another blessing: Timmy has slept better the past 2 or 3 nights. We have reduced the rate of feeds at night, and are pretty sure the food was just going in too fast and agitating him. We cut him back by 5 ml an hour (that is 1 ounce less over 6 hours), but he has been sleeping from 10 at night until 5 in the morning. It helps, I guess, that he doesn't wake up to eat in the middle of the night.

And, as you may have noticed from the pictures, he has been smiling more as of late. Looking around more with a contented look on his face. And 'talking.' It isn't really talking, but you can tell he is 'saying' something. We'll take it. We are blessed. And we thank God for the many blessings He has given us.        

Some morning exercise

These pictures show some of Timmy's many faces. His sister was working his exercises with him and then had him sitting up in his seat. It is good to see him sitting forward and working his muscles so well. He got a good night's sleep last night (which means we did, too!), sleeping well almost from 9 to 5. We know this isn't normal and no night comes with a guarantee, but it was nice to get some better sleep, and we are glad he was able to sleep well, too.