Friday, February 9, 2018

Fun With Balloons!

Timmy is still struggling a little with congestion and coughing, but he seems to not let him bother him much, except when he is sleeping. (Or supposed to be sleeping.)

At any rate, he seemed to enjoy the balloons tonight. I picked up 2 boxes of balloon animal kits at Sears a few weeks ago with some "Free Cash" points they gave me to buy anything with. The balloon kits were on clearance and with free money, it was a great buy. All the kids enjoyed the balloons.

Thursday, January 18, 2018

Timmy Feeding Update

Sometimes, these Timmy updates are written to keep track ourselves of where we are at. While you all will enjoy the Timmy pic, and some of you may enjoy seeing what preparing his food entails, this post is mostly a record of where we are at with Timmy's food preparation.

Timmy's had a cold, so his nose and face are in rough shape, but that smile still comes through.

Today, I started with 8 scrambled eggs (this is 4 days worth of his main food)

Added a can of spinach (yes, fresh is better, but canned is easier to store and the garden is dead for a few months here)

Added around 20 ounces of cooked carrots (and the 3/4 cup of cooking liquid)

6 Tbsp of molasses

I also added 3 scoops of evaporated goat milk powder, 1 tsp of salt, and some powdered ginger.
Blended it well, then added 2 cans of Thai coconut milk (the stuff for cooking with)

It gets run through a strainer to remove any chunks, the squeasy bottle gets filled, and the rest gets put into ice cube trays to freeze for the coming days. This batch yielded about a 4 day supply of food.

When the food was finished, I mixed up his fruit smoothie:
3 bananas, 2 cans of pears canned in pear juice (drained), a handful o f frozen peaches, and a can of coconut milk.  This also yielded about a 4 day supply of fruit. From beginning to end, the food production took just over an hour (time savings by making both types of food at the same time), and will have to be repeated twice in an average week. We have trimmed a lot of time off of how long it takes to prepare his foods, yet still don't seem to have any more time. :) 

His fruit feeds stay pretty constant in terms of the recipe, but the main food gets mixed up with different proteins and other vegetables from time to time. He gets about 450 mls of food a day, and 270 mls of fruit smoothie a day. He also gets 60+ mls of bone broth and some water or tea some days, and every other day, a little bit of aloe juice. Aside from throwing up due to mucus from his cold, he seems to be tolerating his food really well on this, and we are working to up his foods a little at a time.

Sorry for the slightly boring post, but it helps us track where we are and what we are doing for Timmy.

Friday, December 22, 2017

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!

Thursday, December 14, 2017

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.

Monday, December 4, 2017

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. 

Tuesday, November 21, 2017

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.

Friday, November 3, 2017

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!