Update & the 'Ugh' of holidays

He didn't let me get a good picture, but he had fun 'opening' a couple of presents from his therapists.

His therapist's seemed to enjoy the soap they got from Timmy, as well. 

We had a nutritional visit in Rochester this week, as well as blood work done. We got more encouragement from his nutrition team, met the new dietitian working with the nutritionist and got some questions answered. He is gaining slowly, but gaining is gaining, so we were happy to hear that report from them, as well.

The blood work came back with almost everything in the normal range, so the diet we are feeding him and the stopping of several supplements are both working well for his body being balanced well, even with the diuretics that help get rid of certain nutrients.

As far as the 'Ugh' of holidays, please don't take this as complaining. There are certainly times we wish life could go back to normal. No tubes, no wires, no endless stream of appointments, medications, feeding schedules, therapists, etc. But if that is the 'cost' of having Timmy with us, I don't want normal. But it doesn't mean that we necessarily enjoy all that goes into the cost.

So what about holidays? While they are special times, and we enjoy the pause to reflect on God's blessings in special ways, a pause means something different for us now than it did a couple of years ago. I just want to share to help you understand us better or other friends that may have medically difficult children or even a spouse or parent in their lives. Holidays are different. We have medications to order every 2 weeks (due to limited shelf life), others every 30 days, g-tubes get ordered every 3 months, and enteral supplies (other feeding supplies and g-tube care) every month. One pharmacy is only open Monday through Friday, other schedules are harder to figure out. Since insurance covers supplies every so often (at different intervals for different things), it is best to order some as soon as they are available to order. For example - I order Timmy's g-tube on the 22nd every 3rd month. It's in my Google calendar. Today, that works out to the Friday before Christmas. Apparently, that is a bad day - offices are closed. The schedule gets moved up 4 days from the old schedule. This time, there is no 'need' factor, just a reworking the reminder in the calendar and another phone call to make another day. Not much, but it adds up.

As far as the rest of holiday celebrations, we aren't as good at juggling as we would like to be. Holidays can be overwhelming in expectation, even if not much special happens.

We are looking forward to special Christmas Eve services at church on Sunday. Due to the timing of feeding schedules, not all of us will be there for all of it. Timmy may make it to the evening service, but not be able to stick around for the fellowship time afterwards. While many will put up with his retching sounds during a feed, it is a lot of work to take a portable feed. (Syringes of food, water for flushes, medications, burp cloths and supplies for venting/burping his tummy, and trying to position him to keep his food own). 

I share all this, not as a complaint (I love having my boy with us), but hopefully to help you understand us better. We've changed. It isn't you, it's us. We miss the old us more than you do.

We will have a quiet day at home on Monday. It looks like several kids will be able to go play in the snow, we'll open some gifts, we'll enjoy some good food (and egg nog, probably), and we'll spend some time reflecting on the Savior who gave up more than we ever could, to bless us far beyond what we deserve.

Merry Christmas from Timmy's Family!

Timmy pictures to brighten your evening.

Good timing makes a good picture. This one was snapped in the split second between grabbing the crayon, and flinging the crayon across the room.

Older brother helping Timmy color.

Timmy enjoying his "Tubie Friend" - a custom made stuffed animal for Timmy with his usual equipment. It was ordered before he has been able to be off of oxygen regularly now. If you're into sewing and looking for a service opportunity, Tubie friends uses volunteer surgeons to make the friends and provides the materials to do it.We paid the volunteer donation to cover the cost of ours and shipping charges, but they will give them to children who request them. I think they may get a discount on "Build-A-Bear" stuffed animals (or donations). This one came with a card that had a favorite verse from the Psalms on it. "I am fearfully and wonderfully made." 

As far as being off oxygen, the VNA nurse noticed that his heart sounded less "Timmy-like" on her last visit yesterday. His normal beat is more like a galloping horse than a regular heart beat, but not recently. What does this mean? We don't know, but there are 2 possibilities that we can think of. Possibility #1 - in switching one of his medications, it is helping his blood pressure in a way that evens out the pressures between the chambers of his heart and there is less 'backwash' between the sides. Possibility #2 - is that his heart is just working better due to how his heart is growing or due to some level of healing of his heart. In either case, we are grateful to God that even as good as he has been looking (add the doctor that delivered Timmy to the list who have said it), improvements in any area are still a welcome blessing. Timmy has been throwing up quite a bit the last day or so, so he may be fighting off a stomach illness, but he has had an increase of energy lately (even while sick) that has come with his heart sounding better. 

I started to just post a picture update, not thinking there was much to update, but I guess there was. Been a busy few days around here, and it is good to stop and think about the good news.

Some of my 'son'shine for your morning.

Timmy has been wide awake the last several nights around his bedtime. Here he is an hour before bed - he really gets his second wind.

And a short video of Timmy playing on his piano. I may have to take more video for the therapists as Timmy has not wanted to work much for them recently. He 'shows off' before they come and after they leave anymore. 

Happy Anniversary, Timmy!!!

If you've been following for long, you know the anniversary isn't because Timmy is married, but because Timmy came home from the hospital 1 year ago today. What a difference a year makes!

I look back at last year's posts and I see what I wrote, but I also remember what we felt. We were excited to be coming home, but we were also overwhelmed at the responsibility we were taking on. We were anxious over whether Timmy would even make it through the week. We were even slightly terrified by what lay ahead. We were low on sleep. And we were a little tense. If you know us well, you may be able to see all of that in the picture of Jen holding Timmy at home a year ago.

It took a while for the tension to lessen. There was a month or so of sleeping on couches in the living room. There were to-do lists to be prepared for what would come next. Even getting family pictures taken was tainted by "This could be our last family pictures with Timmy." I talked to the people at the funeral home. We bought cemetery plots to be ready. But slowly, the tension has faded.

The tension today is a different tension. In a way, we are still overwhelmed at times. There is still apprehension (isn't that a great word to use instead of saying 'fear?') over how to move forward with the new normal in our lives. And, yes, we love the new normal! (Timmy still with us and growing and developing) We wouldn't trade it for the expected outcome we were given at the hospital. We know we've been blessed beyond all expectations that were given to us, or that we had on our own. God has been very good in even giving us this milestone! And we'll take every other milestone He gives us. Today's tension involves a regulated feeding schedule, medication schedule, therapy schedule and a regular schedule of throwing up what we feed him. It involves cleaning up an insane amount of outfits, burp cloths and blankets from when he decides to not keep his food down. It involves a lot of effort to do things we used to take for granted. But, in a sense, it is a good tension. One that blesses and frustrates at the same time.

I'd like to say that the past 14 months has prepared us to be ready to face whatever may come, but I know that isn't true. What I can say is that God will prepare us to face whatever will come. Why? Because I learned that life had not prepared me for the last 14 months, but God met that need. He prepared us, He walked with us through it, He provided daily for what we needed and much, much more.

So, Happy Anniversary, Timmy! Please know that we are blessed to have you in our lives.

Another good visit with the cardiologist

We only go every 3-4 months anymore. There aren't as many tests run, either. They check his weight, his oxygen sats, and the doctor checks him over and listens to his heart. 

I remember going to cardiologist visits hoping for a new test result, hoping for a change in Timmy's heart that would allow for a surgery. While that would have been nice, we've learned to enjoy the incredible answer to prayer that was different than what we were asking for. I often marvel at how often people answer another person's question by answering a different question. "What do you want for dinner?" "We had fish for lunch." It may answer the question, in a weird sort of way, but it comes from anticipating why the question was asked. Often, the answer doesn't actually answer the question. In this case, we asked God to heal Timmy's heart. His answer has been "He's doing just fine." In this case, the answer to a different question answered the question behind our request to heal Timmy's heart. Our desire was that Timmy would be OK. God's answer has been that Timmy is OK. A different road to the solution we really wanted. We are blessed. Today, the cardiologist told us about another patient who is similar to Timmy, but with more 'problems' in his medical file. This other child, with sats lower than Timmy, is an active teenager who plays basketball. I don't know what life will look like for Timmy, but God keeps reminding us that His options for Timmy are more than the doctors can see, and more than the sum of his diagnoses.

The outcome of today's visit? Well, we got rid of another supplement, we're going to change out a diuretic for a once a day medication (instead of 3 times a day), and we're dropping to just two times of giving medications a day. We left the hospital with 6 medication times a day, we had dropped to 5 times, and are happy to drop down to twice a day meds.

And as always, doc says Timmy looks great!

We are blessed!

Memories

A year ago. It seems so far removed from today, but the memories are still relatively fresh.

Today was the original date scheduled for Timmy's heart surgery.

It became the day we met with the surgeon to hear him say that surgery wasn't possible.

He also told us Timmy would likely not survive the winter as a cold would probably kill him.

But, here we are, 12 months later.

And today, we go meet with Timmy's cardiologist.

We've stopped wondering if maybe this appointment we'll hear that surgery is possible.

We've stopped wondering if this appointment might result in him going back to the hospital.

While not nearly so earth shaking, we're hoping to adjust some medications today.

Other than that, no worries, no hopes. Because our son is still with us, and that is better than any news the Doctor can give us. We are blessed, and even celebrating this anniversary by remembering a year ago, is a pleasant thing to celebrate.

He's feeling better than he looks.

I've always seen the comparison between the way parents react to the first child vs. the 3rd or 4th child. You know: First child sniffles - call the doctor, third child gets a 4 inch cut on their head - here, put on this bandage and take some ibuprofen. 

This week, we show how the ninth child does in these scenarios. Timmy broke out in a rash of sorts this week. It could be something similar to fifths disease or hand, foot, and mouth, or it could be something similar to chicken pox, or mumps or something. Anyway, we recognize it as some virus driven rash that Timmy is fighting, we treat him at home, and he is bouncing back very well. He really only had a day or two that were rough, and then he bounced back. Despite all the spots, he hasn't been itching at them, and aside from a small fever, hasn't shown any problems other than the spots.

Less than a year ago, we were told a cold could kill him because he was so weak. Now, he just adds to his list of things he has fought off. Still not sure what to label this one, but we're good with that. This is one strong boy, and we praise God for every miracle we see through him.

Nutritionist & Dietitian Visit Update

Well, we made it up to Rochester on Wednesday to see Timmy's Nutritionist and Dietitian. No extra visits or tests this time, so  simple 3 hour drive for an appointment and then 3 hours to get home. We were a little nervous about what they might say about some of the changes we had made to help things go better for Timmy. We had already gotten some negative feedback from a Facebook group on tube feeding about a change or two. Anyway, about 10-15 minutes into the appointment, Dr. Gable tells us "You know, I feel like we're going to talk for 45 minutes and tell you to just keep doing what you're doing." They did end up sticking with that plan. Jen had a couple of questions for them, which made them both pretty excited to actually have to do some figuring for us. We got some good input and advice on how much water Timmy should get in a day, some help figuring a new feeding schedule with fewer feeds during the day, and a good suggestion on one of Timmy's blends. It might not sound like much to get out of 6 hours of driving, but between the advice and the supportive comments about what we're doing, it was well worth it.

We also got a new high chair for Timmy this week. It is a 4 in 1 seating system that works as a high chair, a booster, and a reclining high chair and booster. Timmy is supposed to be fed at an angle, so we are hoping this will help keep him in a better position for digestion to go easier. So far, we're unsure as to whether it is a help or not - only time will tell.

It looks like he is helping with his feeds, but he is just holding the syringe. We can't get him to push in the food, yet.

It does appear he enjoys his chair, though. And having toys and books to look at while eating.

Here's a better look at the angle we can sit him at when he is fully reclined in the seat.

October update (since they seem to be coming less frequently these days)

We're still here! It seems odd that a year ago I was posting at least once a day, and now I go about 3 weeks between posts. Just 2 weeks ago, we passed the anniversary of taking Timmy to Rochester and getting him admitted that day to the PICU. I am glad for a calmer fall this year. 

So, what are we up to? Well, Timmy has gained a little weight again, and is doing well in all of his therapies. Still quite a ways behind where our other children were at 18 months, but making good progress and often impressing his therapists.

Nutritionally, we are hoping we have figured out a better plan for Timmy food-wise. For a few weeks (at least), Timmy was throwing up several times a day and we were fighting to keep food in him. We are being optimistic, but we have had 2-3 days of nearly no vomiting. Optimistic, because we never know with Timmy, but are hoping we found the adjustments to make his food work better for him.

We are also scheduled to see nutrition up in Rochester this week, so maybe we will get a little more direction or encouragement in what we can be doing for him. But, over all, he is getting what he needs and has been gaining weight slowly. On top of that, everyone continues to tell us how good he looks. I have learned that recognizing a healthy glow is more important than a medical degree. Doctors and nurses continue to say things like "He's not gaining as much as we'd like, but he sure looks good." We'll take it. We think he looks great, too.

Since these are the first pictures I have taken since my last post, I was having fun getting some shots of Timmy. Enjoy!

He sure takes a nice picture. :)

Also, you may have noticed that Timmy has had his first hair cut. The trim from several months ago wasn't holding anymore, so he has a slightly more mature look now.

Life with Timmy, what's not to love?

It is great to see Timmy continuing to grow and develop. Some things don't change: he is still on several medicines, he still has a major heart issue that is not a good candidate for surgery, he still needs oxygen to keep his oxygen sats over 70% most of the time, he is still being fed by a g-tube, and he is still a great joy in our home.

Some things continue to change: he is sitting up for longer and meeting every goal the therapists set for him, he has been sleeping better through the night again, he is getting faster at rolling around the room (especially when getting 'chased' by daddy with the hair clippers - sorry, no new picture since last night's trim), and we have removed 2 supplements from his medicine list (as per his cardiologist).

But here he is playing like a champ!

And smiling like a champ! (He's always had a great smile)

Actually, several of them.

Such a silly boy.

The kids love playing with him and reading to him, as well. Even if the child doing the reading doesn't actually read, yet.

His pillow helps support him and make it safer to leave his side while he is sitting, and his toy (a gift from his speech therapist) keeps him pretty occupied.

Time for the bi-weekly update! ;)

First, the picture. Right before this picture, Timmy rolled from his back, onto his stomach and continued right over onto his back again, then up on his side to look under the couch. Even with the wires and tubes, he's getting to find his way around.

Something really interested him under there. Jeremiah found a couple of his plastic balls under the couch, so we think those may have been the culprits.

He's continuing to do better sitting up and playing, playing on his stomach, and making babbling sounds closer and closer to words. All good news as far as his therapy is concerned.

The VNA nurse that stopped by today could not believe how good he looks. (We already knew he looked really good - such a handsome fellow!) She also weighed him and his weight has hit an all time high. He had lost a little weight over the course of the last month as we have been transitioning to a blended diet. Partially, that is a common occurrence when changing over from formula to real foods, and partially, we were still learning how to get his calories in the volume of food he could tolerate. 

On that front: even more good news. After meeting with the dietitian and nutritionist again, we realized we had a few big steps to take to get calorie counts up there. We are still working on the adjustments, but we submitted one of our blends to the dietitian to check over and we got a big thumbs up. She said our feeds were just what Timmy needs to continue to grow and develop. She also said she checked in on the blog and feels our post on preparing blenderized diets would make a good start of a YouTube video series on preparing blended foods for g-tube patients. We'll leave all that for someone else, but are grateful for the vote of confidence from the professionals. We have a great team of Doctors, nurses and professionals working with us with Timmy. We hear stories of other families struggling with the caregivers for their little ones, and we are more that appreciative for the team we have. God has been very good, and we are glad.

The only down side currently is that Timmy isn't sleeping super well at night, so we are again low on sleep around here. Such a small complaint with all that we have seen and been through, but your prayers are appreciated.

Round of Appointments Completed!

Well, our week of appointments are over. When I sit down to write updates, I always think - I should take pictures of Timmy at the Doctor's office, or at the hospital, and I always forget the next time. So you can enjoy pictures of Timmy while he was getting his breakfast this morning.

Last Friday was the cardiologist, and we 'lost' one of his diuretics from his medication list. So far, that change is working and we are glad to see one medicine go. On Monday, Timmy updated his primary care physician on his growth and development. He was weighed, measured and questioned thoroughly about his abilities and what he has been up to. I had forgotten that it had been about 3 months since we had been to see his primary doctor (it was 4 since the cardiologist appointment). When the doctor pulled up the growth curves, Timmy is still hanging onto the absolute bottom of the growth curve. If he were to hit the 5th percentile, it would be a huge jump for him. Kids grow at their own rate, and he had a few months off from growth, so the doctor would love to see him get up higher on the curve, but it is nothing worrisome at this point.

Yesterday was our visit to Golisano Children's Hospital in Rochester. We started out in Radiology to meet with Heather Goetzman. I cannot remember her official credentials or even title at the hospital, but she works with the Doctor who placed Timmy's g-tube. She helped us get ready to come home by showing us how to care for the tube site. She put a new Mic-Key button (g-tube) in back in December when Timmy's tube had come out and we went to the ER up in Rochester. At any rate, we have a real affinity for Heather and appreciate all the help she has been. She looked at Timmy's tube site (the primary reason we made an appointment to see her) and declared that it looked great! There had been some granulation tissue that was there (scar tissue the body produces to try to close the hole) that had been swollen and red and tender. We had been prescribed a steroidal cream to put on it, but it wasn't helping, and seemed to be causing more trouble. We had heard just using diaper cream with allum powder helps so Jen had been treating the site with that for the last week. I guess it was a success.

She came in carrying two boxes with g-tubes in them. She looked at Timmy's tube, decided that it was time for a shorter tube, and swapped out his tube and updated his chart. Our appointment probably lasted a half an hour, with plenty of questions on both sides, advice given, and the 3 minutes dealing with the tube site and changing out the tube. Well, and she also made sure we knew how to get in touch with her directly if we needed to - a pretty common thing to happen with Timmy's caregivers in Rochester.

We had an hour off between appointments so we headed up to the PICU to visit some friends. Not Facebook friends, and not friends that we drop in on or invite to our house, but still friends that greet us with smiles, hugs and are fun to talk with. Not many were in that we knew yesterday, but we saw Dr. Alfieris, Dr. Rubenstein ("If it wasn't for seeing you two, I wouldn't recognize Timmy!"), Elana (the nurse who made Timmy's sign over his crib, among other things), Jessie, Jen, and Chris. All special for different reasons, and all special for the same reason - they all loved on Timmy while he was in the hospital and continue to gush over him when we visit. I think they all got to hold him while we were there and see Timmy's smile. 

Next we met with the gastroenterologist (Dr. Megan Gable) and dietitian (Elizabeth Bonaccorso). Last visit, the dietitian was not in, so this was our first visit with both of Timmy's nutritional care team. They were both very helpful, very supportive and we exchanged a lot of information. We let them know what we have been feeding, what Timmy's feed schedule looks like, and where we are trying to head with his feeds. They gave us direction as to where to head with the feeds, and things to add to his feeds to bulk up calories, to round off his nutrition, and to help things go smoother. It was another fairly long appointment and we gained a lot of good information, and got Timmy's food prescription changed over to a food based 'formula' for his tube. We will still be blending most of his food, but it gives us more wiggle room when we are running short on time or have to be away from home.

The nutritionist wanted to see blood work to see how Timmy's levels of various things were doing, and we asked if we could take care of that at the hospital before we left (save a trip for Timmy). She sent the script down and we stopped to have his blood drawn on the way out. We are not sure of the name of the woman who drew his blood, but 'Mama D' was able to pull it off without Timmy breaking into tears. She entertained and distracted him while holding his arm still and getting the needle into the vein on the first try. 'Mama D' even sang "hallelujah" as she entertained Timmy. The results were available this morning, and most of his numbers look good, at least in my untrained opinion. A few numbers were 'off' but I'm not sure what those mean, exactly, and often the off numbers were met with "We're not worried about those" in Timmy's case. We'll see what the official word is as the doctors look over the results.

Aside from crazy traffic on the way home, it was a good day and we are grateful. Mom & Dad Hadley came down so we could head up with just Timmy this trip, so the rest of the kids had a great day as well. They were still chatting excitedly about the events of yesterday with grandma and grandpa this morning. Yes, we know we are blessed. We feel it often and know our blessing exceeds our needs.

A Week of Appointments

Today started our week of appointments for Timmy. We are in the midst of 3 weeks of appointments for dentists, chiropractor, and eye doctor visits for the family, but Timmy started his big week today with seeing his cardiologist. This was the first cardiologist appointment in just over 4 months! 4 months! We're pretty excited about that. We're also pretty excited about having another good report from the cardiologist. Nothing has really changed - which is a really nice blessing when you have health conditions like Timmy.

Over the past 4 months, some questions had been building. Not life-or-death questions, but musings we had. The big question was how we would know when it was time to adjust his medications (as in increase dosages). The cardiologist increased 2 medications very slightly for us to try, and then suggested taking another medication away! (With the hope to take 2 more away in the next several weeks if this one goes well) 

If you had asked me which one we should do away with, I would have picked the chlorothiazide (Diuril). Several reasons: 1 - the insurance only covers a form of the medication not being made currently, and this one costs $55 a month (not earth shattering, but not just pennies), 2 - the mixture they make of crushed up pills in water does not stay mixed well, even with twice daily shaking, 3 - it always runs out ahead of the 30 days it is supposed to last (because of sludge left in the bottle that won;t mix back in with shaking). Without knowing any of this, the cardiologist told us he wanted us to try to go without the chlorthiazide. His reasons were: 1) Timmy is healthy now and doesn't need 3 diuretic, 2) this one pulls more electrolytes out of the body. I like his reasons, too, but it feels nice to be moving toward a few less doses a day. From 9 medications down to 8 as of today.

Timmy was celebrating the good news by banging out some tunes on his piano.

Bonus Therapy Picture Post

Timmy had a really good day of therapy today. After working hard for his OT, he continued to work for his speech therapist. These were taken toward the end of his 2nd session today, and toward the end of a 15-20 minute stint of sitting up and playing. Quite a large bit of work for our little guy, but on the days he allows us to push harder, we'll let him work harder. 

I kept the therapist out of view, but she got a lot of smiles today.

He moves quite a lot, and makes it hard to get many good pictures. Just a blur at times.

Timmy's Diet & Tube Feedings

I realize with Timmy & his blog, some things slip through the cracks. When we first start down a new direction, we are often overwhelmed and may not post many details. Later, when we are getting the hang of something, it seems so 'old-hat' that we don't post. We wanted to give you just a small glimpse into life at our house feeding a child with a tube.

When we first came home from the hospital, Timmy was being fed breast milk and formula. Over the months of limited sleep and all the energy needed to care for Timmy, his diet changed to all formula. After turning a year old, we saw a nutritionist that switched Timmy over to a formula using real food for children over a year old. Through all of this, we noticed that any formulas we had used were harder for Timmy to digest than the breast milk had been. It meant a struggle to get the recommended amount of food in him each day. The nutritionist set a goal of 650 ml of food (formula) a day - and it was not looking promising.

Fortunately, we had been doing some research and reading about blended diets for 'tubies' (people fed through a g-tube, ng, or nj tube or some other variety of tubes). After deciding on a handful of foods to try first (as they must be tried one at a time to check for allergies or processing problems) we dove into blending. We had a decent blender, but 2 brands kept being suggested as being able to process foods into small enough pieces to go through a 12 french tube (about 4 mm diameter). We purchased a refurbished Blendtec and got to work.

Using the Blendtec and adding raw or cooked foods (depending on the food) and water with a little bit of Olive Oil to reduce frothing, we make a puree that is about the consistency of a stage 1 baby food. The high power of the blender makes it look almost like a liquid while it is moving, but it comes out with a nice thickness to it. If I remember right, this is a batch of avocados.

The blended mixture is then poured into ice cube trays to facilitate measuring and defrosting the food, covered with plastic wrap, and put in the freezer for 12-24 hours to harden up.

When the cubes are frozen, we remove them from the trays and pack them into freezer bags in the freezer. Here we have: Avocado, sweet potato, prunes, peas, blueberries, bone broth, green beans, broccoli, chicken, eggs, peaches, apples, and garbanzo beans.

Each week, 7 bags are made up of a variety of the foods that we have. 16 or 17 cubes get put in a bag, and set in the freezer with about a days worth of food for Timmy.

Each day, we take the bag out, put the contents in a pot, and defrost Timmy's food.

Once defrosted (or cooked if cubes are still frozen), it is blended again to get rid of any bigger pieces leftover from blending a large batch, and then it is strained through a sieve to make sure we remove and 'chunks' that could clog Timmy's tube.

To thin it out a little more, we add a few ounces of formula and mix it together. Some molasses is also added to help with nutrition, calories, and constipation.

We pour the food into a Squeasy bottle (on left) which makes it easier to load the food into the waiting syringes. 

Syringes are loaded, capped, and set in the refrigerator to take care of the next feeding. This is Timmy's 'dinner' - his food that he will get in 2 doses around 5:30-6:00. Timmy gets 150 ml of food at dinner out of the 540 ml of real food he gets during the day. We also give Timmy 200-220 ml of formula during the day for a total of 740-760 ml of food a day. (Currently, this changes slightly from time to time as we tweak and add volume to his routine.)

 At feeding time, Timmy gets a small shot of water through his tube about 15 minutes ahead to help get his tummy ready for a meal, and then the food is pushed with the syringe through the g-tube. At present, he gets his food at a rate of about half an ounce every minute and a half. Now if we could just get him to help push the syringe at the appropriate intervals. :)

Tube feeding is definitely a different world than we had ever experienced with our first 8 children. It has a steep learning curve, but hopefully one we are staying ahead of as best we can. We have found that many children have feeding tubes for many different reasons. Some won't eat, some have oral aversions, some have illnesses that cause digestive issues, some have problems getting the food to go into their stomachs instead of their airways, and some, like Timmy, have to work too hard to get food in orally (can't breathe, eat and function properly at the same time). We are grateful that this one 'small' adjustment has allowed Timmy to grow and thrive and let his heart and body work easier when his heart defect already makes things hard enough. We do not know how long this stage will last for Timmy, but step by step and day by day it continues to be a great adventure we will enjoy with him.