Wednesday, June 14, 2017

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.

Tuesday, June 6, 2017

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.