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.

Continued Progress

Therapy continues for Timmy with PT, OT and Speech on a weekly basis. What is shared with us gets worked on through the week with Timmy and he has been growing and developing well over the last few weeks. 

As far as praises: Timmy is continuing to gain weight even as we have adjusted his feeding schedule and no longer gets feeds through the night. He has a feeding before bed and then gets food in the morning with his 6:00 medications. Even with leaving a 10 hour gap between night time feeds, we are able to get enough food in him to meet his needs and keep him gaining. Primarily, this is because we have gone toward using more real food over the formulas. We can give him a formula and it will persist in his stomach for hours - making him full and unable to take more food in, but when we give him real foods (chicken, avocado, berries, fruits, sweet potatoes, etc) he is able to process the food better and he is able to handle a larger volume of food. The nutritionist set 650 ml as the volume goal for Timmy until our next appointment. As of tomorrow, we will be 5 weeks until the next nutritionist visit, and Jen has Timmy's feedings up to around 730 ml. The closer we are to 1000, to more likely the nutritionist will be to order the whole food enteral 'formula' for Timmy. It is a completely balanced food for people with g-tubes made from real food. We can work on doing that ourselves with blending Timmy's food for him (which we are doing already somewhat), but with Timmy's health needs, a well balanced diet is more important to his growth and development, and the real food formula would make sure we had all the bases covered.

Also, therapy is going well and Timmy is taking off in leaps and bounds. Well, his leaps and bounds include sitting and rolling over, but they make us happy - and apparently they make him happy, too. Actually, this picture of Timmy sitting without being held or being assisted (even if it is for very short periods of time), brings us a lot of joy. We are blessed.

Never a boring day, but not much excitement

I do not miss the days of multiple blog posts in a day. I don't even miss the days of daily blog posts. I do apologize for going so long between posts, but between not much excitement (a definite praise), and  never actually being bored, the blog takes a back seat to life.

With that said - there is actually stuff to report. Timmy has met his therapists. Kim for Speech, Katie for Occupational Therapy, and Sarah for Physical Therapy. Speech is concerned with all things oral - speech and eating by mouth in particular. OT and PT overlap a lot at present, but having multiple people working with us gives us more ideas of how to work with Timmy during the week. All three therapists are wonderful with Timmy, seem very competent in their knowledge and abilities, and seem to fit into our home nicely (There probably is a better way to express that, but having therapists that are easy to talk with and are personable makes this whole 'having multiple people into the house every week' thing much easier to handle).

As far as therapy is concerned, Timmy is improving in his sitting, reaching and rolling skills all the time. His full-time in-house therapist works with him and enjoys showing off his victories when Timmy's other therapists come to visit. At times he is vocalizing more, grabbing more things, and shoving things in his mouth (which makes Kim - the speech therapist) happy. In the next week or so, we may even try to introduce foods orally again, so progress on many fronts.

It seems with every advance, we have little set backs. We haven't figured out if it is allergies or a summer cold, but congestion has hit in the house, and afflicted Timmy as well. His breathing is a little more labored and we have a little more added to his care routine, but so far he is handling it all in stride.

I will hope to update sooner next time, but VBS starts up next week, so I will not make any promises. Thank you all for your concern, interest and prayers on Timmy's behalf as well as ours. We can't help but be grateful for the great support we have.

A Really, Really Good Day

It is hard to know where to start today. As I mentioned last week, today was the day to head to Rochester for a swallow study for Timmy and to get together with a nutritionist who works with 'tubies' (patients fed with a feeding tube). On top of that, we hoped to stop by the PCCC (Pediatric Cardiac Care Center) where Timmy (and Jen, for the most part) lived for 2 months last year, and we hoped to stop by the Ronald McDonald House Jen stayed at to drop off some more pop tabs and leave a donation for her stay. 

Today, I'll start with the negatives:

1) I didn't bring the checkbook to write the check for the Ronald McDonald House

2) We didn't get to see everyone who provided such excellent care for Timmy (and Jen and I) when we stopped up to the PCCC.

3) . . . OK, I guess that was about it.

So, on to the positives. I'll write them out as a list because writing about them all would make this really long.

1) We had safe travels and Timmy traveled well for us today.

2) The swallow study went well (not the best it could be, but certainly not the worst - he aspirates silently), and we have permission to start introducing tastes orally. (And for the Speech therapist to work on it with us)

3) The swallow study went quickly and Timmy actually swallowed for them.

4) The speech pathologist offered her help with any questions we or Timmy's team might have.

5) We had a friend sit with the kids so Jen and I could both talk with the nutritionist.

6) The nutritionist was VERY helpful.

7) We found out we're supposed to replace the g-tube every 3 months - and it is covered (Timmy's has been in for 6 months without a problem - some people struggle with them lasting over a week!)

8) We found out we are supposed to get a new extension every week - and it is covered (we've been using them for 4-6 weeks - some people struggle to make them last a week!)

9) The nutritionist told us all of his feeding supplies should be covered and I should STOP BUYING DURABLE MEDICAL GOODS! (Oops, I was just getting what Timmy needed)

10) The nutritionist was not only OK with us 'playing' around with Timmy's feeds to see what worked best for him - she was glad we do, and likes our 'flexibility.'

11) When we brought up wanting to move away from formula to something more 'real food' she brought up several options of commercial tube feeds, and even help with a blenderized diet. (Our hope and eventual plan - it is nice to have support, help, and encouragement in it, though)

12) The nutritionist will be working with us on an ongoing basis as part of Timmy's team and not just a one visit thing.

13) Did I mention the nutritionist was VERY helpful!

14) The nutritionist works with a dietitian that helps create recipes for blender diets (crunching numbers to make sure all nutrients are present) and will share recipes they have developed for general use.

15) We were sent home with some samples to help us choose what commercial feed we want to select as a base as we move toward a blenderized diet for Timmy.

16) We saw and celebrated with several of Timmy's caregivers and support team from the PICU (Dr. Jill, Dr. Alfieris, Elana, Liz, Meghan, EJ, Hillary, Jen, Heather, Jessie, and several others whose names slip my mind presently) They loved seeing Timmy and how big he was and how well he is doing!

17) We got to see a few of the people who took care of us at the Ronald McDonald House in Rochester when we dropped off the pop tabs (picture below with Bonnie)

On top of all that, we met Timmy's speech therapist yesterday and were very happy to see her interact well with Timmy and are excited to see what a little therapy will do to help Timmy out. Within the next week, we will meet the PT and OT that will work with Timmy.

All that to say: We are grateful for how God answered our prayers for this visit. God doesn't always answer our prayers the way we want Him to. In fact, I think He more often doesn't answer the way we ask Him to. 

A few examples:

We prayed for Timmy to grow so he could have surgery - God answered with devastating news that Timmy was not a good candidate for surgery.

We prayed that God would do a miracle and heal Timmy's heart - God answered with a heart that still does not function right, but provided a miracle that Timmy is still with us and doing well.

We prayed that God would provide the bare minimum of information we needed to take care of Timmy using a diet or real foods and be able to work toward oral feeding again - God answered with giving us a nutrition team to work with that will provide us with a ton more support and encouragement than we could have hoped for.

You would think I would learn my lesson and just pray that God would do what needs to be done. But somehow, I still think I am smarter than God (at least I act that way sometimes and pray that way sometimes) and try to tell him the best way to do things. In all three of these answers, it wasn't what we prayed for. In two cases, the news wasn't what we wanted to hear. In all three cases, I am glad for the answers we received. 

I don't know why my son struggles with a heart issue. I don't know why we needed a ninth child with an extra level of care needed. I don't know why almost none of this has gone 'as planned.' But the longer I walk this road, the less I feel the need to know. I have seen bits and pieces of why God's answers were better than my request (a non-surgical answer for Timmy was better than the surgical possibilities - and may yet result in a long life for him). And that is not only enough - it is more than enough, and we are blessed!

Thank you each for your prayers! I have heard so many times recently that people are praying for Timmy and for us - it is truly overwhelming at times. And please know that even though God hasn't always (or even usually) answered in the way we wanted or prayed for - He has answered your prayers and ours as a loving Father.

Some Improvements Coming for Timmy

Well, even being over a year into raising our ninth child, we still have a lot to learn. Feeding tube feeding plans, speech, physical and occupational therapies, figuring out problems with a child with a different growth curve and different circumstances. Knowing that is the case, and finding out that Timmy should be with us longer than we were led to believe 6 months ago, we have been working to get the help that we and Timmy need lined up.

Next week, we are planning on heading to Rochester to learn about Timmy's nutritional needs and get some advice from some professionals. We will also hope to get a swallow study done to make sure that Timmy is able to swallow foods properly with no physical problems in the way. This will hopefully open the way to working with Timmy on taking foods by mouth and doing some eating therapy.

Today we got a call from the Early Intervention Program coordinator working with us to let us know that they have the therapists for Timmy lined up and the therapists should be getting in touch with us soon to start working on the speech, physical and occupational therapies. For Timmy, it is obviously a big help, and to us it will be a help to learn better how we can work with him to help him in those areas. We have seen him making progress in those areas and are excited to learn more and hopefully see some more progress as we work with him in a more structured way.

As far as recent blessings, one of Timmy's great grandmothers was out to the house recently and was able to see Timmy. The only other time she has seen him was at Great-grandpa's funeral. Unsurprisingly, she does not remember much about that day. She will get a picture of the occasion to remind her. 

We like the happy times. It almost looks like he is clapping, but I think that is just how his hands happened to be held at that moment. He still needs help to clap.