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.


Tuesday, May 23, 2017

Update on several fronts

It has probably been the longest break between updates. In a way, even that is a blessing: We continue to pray for Timmy's health, strength, and healing, but it is nice to not have to be adding requests every day or week for special prayer. 

Timmy has been enjoying playing in his seat, on his mat and even propped up on his tummy on a pillow. Here he is 'helping' Larissa make bread dough (notice the whisk.)


The latest 'problem' is also a blessing. He has been extra fussy and not sleeping really well for the last week. Aside from helping us sympathize more with a friend working long hours and living on little sleep, we have been unable to point to a cause for the added fussiness (staying up late, waking up early screaming, making lots of noises through the night). Since Jen was bringing two other children to the Dr., she called ahead and go permission for him to be seen - nothing 'wrong,' just baby fussiness. While not enjoyable, we'll take a standard baby problem. 

 

This week also brought the results from Timmy's evaluation by the speech and physical therapist. While mostly just technical language and statistics ('standard deviations from the mean' anyone?) it confirms his eligibility for the early intervention program here. We don't expect to learn much this Thursday, but we will be meeting with a woman who will tell us where we go from here. It sounds like they are stretched thin and may not be able to offer both types of therapy that Timmy qualifies for, but being in the system probably gets us on the waiting list when more staff is available.


Many calls have also gone into looking at Timmy's nutritional needs. Since he doesn't eat on his own, and we have been going 7 months now without adjusting his feeds much at all, we have been wondering what sort of adjustments we should be making to his feeding schedule. Our first appointment was going to be for this Friday, but that was made without the scheduler noticing that Timmy has a G-tube, so a new appointment to be seen in the G-tube clinic was made up in Rochester for June 14th. They will be conducting a swallow study to see if we should start working on introducing foods orally (a step in the early intervention work, too), and then consulting with Drs. about Timmy's nutritional needs and where we head with types and amounts of food from here. It will be a long day, but we are looking forward to it. 

We appreciate your continued prayers. It continues to humble us to be reminded by people that they are praying for Timmy. Sometimes the humbling is amplified when we fail to recognize the person who is telling us they are praying for Timmy (which happened yesterday to Jen with a lady she probably hadn't met before). We are also just tickled to be have front row seats to enjoy seeing God's continued answers to prayer on Timmy's behalf. We hope this blog helps you enjoy the blessings and answers to prayer in a more up front and personal manner.

Thanks!

Friday, May 12, 2017

Still Very Thankful

Every CHD (Congenital Heart Defect) patient has their own unique story. Many have a story of surgeries - some starting right after birth, some with one surgery, some with a string of surgeries stretching out before them. Each has their own struggles: many times feeding issues, breathing issues, growth issues, and the list could go on, and on.

Timmy had his well child visit today and was weighed, measured and stuck (lead test and hemoglobin). He is still very low on his growth curve, and very low on his oxygen saturation, but is doing well. The next scheduled Dr. visit is in 3 months. We are hoping to schedule a visit with a feeding clinic to figure out Timmy's nutritional needs, but really appreciate the relative low number of Dr. appointments at this stage in Timmy's life.

One of the CHD families that we keep up on and pray for just landed back in the PICU with their 15 month old daughter. The cause: a cold. Having had two surgeries and her own unique needs, a cold lands her in the hospital. It never ceases to remind me how blessed we are with Timmy. I know, I would see us as blessed if we had to be in the hospital every month, which really makes me glad for where we are.

Here we are!
Yes, a little surrounded by toys. Yes, with the cannula in because his oxygen has been a little low the last few days. Yes, laying still in his crib to help keep his food in him (he has had some regurgitation issues lately, nothing major, but we try to keep him still after eating to give his tummy a fighting chance) And he has the bandaid from the Drs. office from being stuck. 

God is good and we know we are blessed!

Friday, May 5, 2017

Waiting on evaluation results

We had a physical therapist and a speech therapist to the house today to evaluate Timmy. A huge pile of questions and a lot of 'playing' with Timmy over the course of about a half an hour and they told us we would get their report soon.

What we could figure out is that some of Timmy's abilities surprised them, but we weren't sure if any of the areas were areas of concern just yet or not. They gave us some suggestions on things to work on while we're waiting for the reports to be filed and therapy to start. More tummy time for Timmy, and supported kneeling to start working on leg strength. Just he sort of things we want to hear to keep our home therapy on track and continuing to help him. 

They told us most of their clients don't follow their instructions very well and it requires them to be in homes more often to actually do the therapy with the children. Hopefully, they will find us to be a 'good' client that needs very little attention as it sounds like they have a bit more work than they can keep up with already.

All told, it was nice to hear we are doing some good things, and just as nice to hear some suggestions of things to help Timmy improve. We were also impressed with how the ladies interacted and worked with Timmy while they were here. Not everyone works well with children, but these ladies enjoyed Timmy and were very good with him. They may or may not be the therapists we work with (they might only d his evaluation), but at least it says good things about the group we will be working with.

Wednesday, May 3, 2017

A good first week of being 1!

The first thing you may notice about this post is the lack of pictures. Timmy is still sleeping this morning, (well, back to sleeping this morning) and there were no new pictures on the camera from the last week. As it stands, we probably have more pictures of Timmy from his first year of life than we have of the first years of the other 8 children put together, so I think we're still OK on that front.

Two weeks ago, we met with a woman from the Chautauqua County Early Intervention Program. They help identify and provide services for children who are at risk of having developmental delays. We went back and forth on calling because life was so hectic there for a while. She took Timmy's information and would pass it along to an agency to set up an evaluation. The evaluation is to see whether Timmy 'qualifies' for services through the Early Intervention Program. At the same time, Timmy's Trisomy 21 diagnosis automatically qualifies him for services. The evaluation is scheduled for this Friday and then we will meet again with the first woman to get things set up in about 3 weeks. The outcome of the evaluation will be that Timmy qualifies, but we also hope to learn how we are doing at stimulating Timmy in regards to speech, motor skills and other abilities. We are told they will provide the appropriate level of services to meet our needs: evaluation to look for delays, then, if needed, information to help with any delays, and then, if necessary, therapy if we do not use the information they give us, or it doesn't work. In general, it sounds like a good system, and we look forward to what the speech and physical therapist share with us on Friday.

Timmy is doing well - continuing to move, make more sounds, grab at things, pass toys between his hands, roll over, all on top of bringing joy and many smiles into our home. We are blessed!

In other 'milestones' - yesterday was the first time Jen and I have both been away from Timmy for more than a short, 20 minute span since arriving home. We went and perused items up for auction at a local moving business that has closed, had dinner at a restaurant (We don't go to sit down restaurants very often, and there was some sticker shock, but we enjoyed the dinner), and got some shopping done. Over 5 hours out of the house without any kids - and we spent it without talking about Timmy or the other kids. :)

Hopefully, I'll put up some pictures later this week and have an update on Timmy's evaluation. Thanks for your interest, concern, and prayers for Timmy. We are grateful for each of you.

Wednesday, April 26, 2017

Happy Birthday, Timmy!

Timmy got a little taste of homemade ice cream for his birthday.

It seemed to go well.


But, since he hasn't really eaten anything by mouth for over 6 months, it wasn't very well received. I finished the ice cream myself for him.


Also, not super interested in opening presents. . .


But with a little help he got a hold of his outfits.


He really just enjoys holding on to his clothes - just like a couple of extra blankets.




Some smile from Timmy while in his swing.
With his hands in his mouth.

   Right after removing his hands from his mouth.



And a smile in the process of going away. I love all his faces!




Friday, April 21, 2017

Celebrating 6 months home from the hospital!

Not much to report. He's been deciding to spit up more frequently after feedings recently, but other than that he has been doing well and sleeping well. He has been enjoying his new play mat and having some more freedom without needing the cannula in all day every day.

Enjoy the new pictures!






Monday, April 17, 2017

Timmy's Doing Great, Just Been a Long Week

These pictures at the top are almost a week old, but this has been the normal over the last week. Timmy goes without the cannula while he is awake. Smiling, noise making, moving around a lot.
And he's been taking a long afternoon nap. We are hoping the pattern will continue - a long afternoon nap, and sleeping well through the night.




Here he is this morning - I got lots of smiles. I am sure Timmy watchers like Summer and Colleen will appreciate the big smiles!



Timmy made it out to church yesterday morning - Jen bringing him over complete with feed pump since it was his normal feeding time. Tomorrow the plans are to bring him out for his great grandfather's funeral. He never got to meet him, but his great grandpa got to see some of Timmy's smiles in pictures. Grandpa's passing has made the week a long one, and also makes us that much more grateful that Timmy has been sleeping well and managing well during the day.

Saturday, April 8, 2017

Starting to feel better!

Timmy's congestion has been starting to break up well, and we confirmed yesterday that his lungs have stayed clear with this bout of congestion. He is making lots of noise and playing more these days, and even as he is still congested, has been able to go without oxygen again at times.


We saw the cardiologist yesterday and they did an echo on his heart and see the same dysfunction that has been going on in Timmy's heart since birth. The options for surgery are not any better than they were 6 months ago, and we are beginning to see the non surgical route as a better one for Timmy.

Even with the mess his little heart is, he is doing well. Surgery offers a chance of improvement, but definitely brings with it a set back, and increased risks and new medications. In cases like Timmy, the long term success of surgery is questionable, and may even cause more problems in the long run.


Some day, surgery may be a better option, but for now we are content to enjoy our little one and the many blessings he brings into our home.



Monday, April 3, 2017

Timmy's back to fighting congestion

It seems we go through pretty regular cycles. About every 2 weeks we have a health concern of some sort with Timmy. His food ends up leaking from the g-tube, he ends up not sleeping well, he ends up grunting all night long, he ends up sick, . . .

And then, he starts getting better, or we figure out what is causing him to not feel well and make an adjustment, and we have smooth sailing again. For a few days.

This round of congestion is knocking his oxygen sats way down. We are having to give him several doses of albuterol a day to help support his oxygen levels. The albuterol eventually makes it hard for him to sleep at night, but it is the option we have right now. 

Even in this, we know we are blessed. We know some families that end up back in the hospital every 2-3 weeks. Timmy has been home for 4 months and 13 days. He has been almost 3 months since having a cardiologist visit. Being at home has its struggles, but we like this option over the alternative.

We would appreciate prayers that he will be able to sleep well, and that the congestion would clear up soon. He sees the cardiologist this Friday and we are hoping to find out more about what may lie in the future for Timmy. More about how his heart is doing. Is it improving? Lots of questions. But for now, just a desire to see him back to breathing easier.


Wednesday, March 29, 2017

Baby steps - making progress.

Between the normal day-to-day of medications, changing the tape on the canula and keeping the sensor on his toe working properly, we have the normal day-to-day taking care of a baby.
His milestones come at different times than our other kids, but we still enjoy seeing the progress and encouraging his growth and development.
He doesn't bounce much in the bouncy seat.


He doesn't sit up real well without several props.



But look at that boy hold an ice pop. (He didn't eat it - don't worry)


And he can make lots of noise and smile.


We are blessed.


Sunday, March 19, 2017

More blessings

This week has convinced me that we have not totally escaped the fog that our heads have been in since late September of last year. When Timmy went in the hospital, we pressed 'pause' on a number of things in life. Normal, everyday things just got pushed aside to make room for the necessities: loving on Timmy, visiting Timmy, keeping each other encouraged and rested enough to meet the day's challenges, keeping kids fed, clothed, and learning, and keeping gas in the vehicles for the many trips to Rochester.

When we found out a month or so ago that the cardiologist thought Timmy was in a good place and much stronger than he was in the hospital, we felt a weight lift. And with it, I thought the fog had mostly rolled away.

Until this week. This week I found mail from December that I had not yet dealt with. I found papers that I stashed to deal with later that still need to be cared for. It made me somewhat upset at myself for not keeping up better, but these faces of Timmy always remind me of what is really important.

We are blessed that he continues to grow. We are blessed that he continues to develop. Certainly not on a standard schedule of development, but he is fighting his way forward. We are blessed to have the strength to care for him. We are blessed to have the finances to meet our needs and Timmy's needs (and then some). We are blessed to see these faces every day, to hear the sounds coming from his mouth, to watch his eyes dart around looking for us at various times.

God has been very good to us.






P.S. - for the observant, you may notice that these pictures are not the most recent pictures, but they are from this week, and we haven't shared them yet.