Friday, October 13, 2017

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.


Sunday, October 8, 2017

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.


Tuesday, September 19, 2017

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.




Thursday, August 31, 2017

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.

Thursday, August 17, 2017

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.

Friday, August 11, 2017

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.




Monday, July 31, 2017

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.



Tuesday, July 18, 2017

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.


Tuesday, July 4, 2017

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.

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.