Friday (8-28)

What a wonderful week it's been. Kade is doing great and just keeps getting stronger. His therapists have been so happy to see how quickly he is gaining his motor skills back. One therapist even mentioned that Kade may break a recovery record if he keeps this up. He has figured out how to roll from his stomach to his back and to his stomach again. This week Kade also was able to get himself into the crawling position and crawl forward a few steps. They are so pleased that he may not have to go everyday, but just 3 times a week.

His stomach is getting stronger as well. Kade now only needs to have the feeding pump hooked up 4 times during the day to do bolus feedings of 6 oz at a time at a hour and a half each. He does need a continuous connection over the night, to get the rest of his daily dietary needs met. He has shown some small interest in taking very tiny tastes of pudding, but he is unable to swallow really anything yet. He usually ends up looking like he was in a food fight by the end of each meal. We are so thankful for the forward progress so far, and know that as he gets stronger and his body grows he will gain the ability the eat back.

Blessings to you and Thanks again for checking in on Kade.

Sunday (8-23)

We do not have a lot to report with Kade, which is always a GOOD thing! He continues to get stronger, even the therapists are seeing improvements. He still does not eat by mouth, but seems to be a little more interested in food. We continue to put him the highchair when we eat and give him some type of food to "play" with. If he happens to put food to his mouth we are pleased, but we definitely do not want to force the issue. We continue to pray that as he becomes physically stronger the urge to eat will come back. We have been successful with bolus feeds, which allows for a little freedom of the feeding tube being connected 24/7.

We have another full schedule of therapy in the coming week. We do find time to play outside with this wonderful weather we have been having! Wagon rides of course, and swinging in the backyard are Kade's favorite activities.

Hanna is excited to start in the Pre-K room tomorrow, still she will dearly miss her BFF, aka Ms. Cole. These kids grow up way too fast!!

Tuesday (8-18)

We have decided to go to Madonna for all of our therapy. We are there every morning, Monday-Friday, doing some type of therapy. Kade is getting stronger everyday! He is certainly holding his own with Hanna, a good chunk of hair in his fist is his main defense! I have busted them wrestling a couple times, Kade just giggles, so I usually let it slide-with supervision of course :-)

I wanted to mention how wonderful both mine and Troy's employers have been with this whole situation. Everyone we work with has been so generous, we cannot thank you all enough. Thank you and God bless!!

Thursday (8-13)

Sorry we have not posted in a while, we are busy enjoying all of the comforts of home! I know many of you continue to check for updates daily, but no news is good news these days!! It was nice to rest over the weekend, but this week has been full of appointments and a lot of hard work for Mr. Kade.

Monday we saw our pediatrician for Kade's 1 yr/follow appointment. He is right where he needs to be for height and weight. We will be going back next month for another follow up and to get shots. Dr. Russell was nice enough to let us skip shots for now, and we also got out of a finger poke!

The last couple of days have been filled with therapy. Kade is doing very well getting his strength back. He can now go from sitting to tummy and then to his side, and sometimes he makes it to his back. He is reaching and leaning for toys which is a great sign that his trunk muscles are getting stronger. Eating is still a hurdle for us, so we continue to work with him. We pray that as he physically becomes stronger, his eating by mouth will improve.

More in the next couple of days!

Birthday Weekend

We had a wonderful birthday weekend doing nothing!! The four of us celebrated Kade's birthday with balloons and Elmo cupcakes. Kade did smash the frosting around and squished it between his fingers but was not interested in eating it. We had some presents for him which he and Hanna enjoyed playing with together.

Kade is gaining his strength back more and more each day. He has been able to get himself on his side from both his back and tummy. He also will scoot backwards when on his tummy. It is obvious to us that he remembers how to roll, crawl, and move but he doesn't have the muscles to make it happen...yet! We know that it will only be a matter of time until he is on the go, especially when it comes to keeping up with Hanna, she truly is his best therapy.

This week is going to be full of therapy evaluations, hopefully we will find a good fit for Kade's needs. We had his 1 yr appt scheduled even before he got sick, and it just happens to be tomorrow, so we will get on track with a care plan from his pediatrician. A nurse from Children's Home Health came by today to see how things were going. They will visit again next week.

We did make it to church today and it was nice to see everyone there, both of our Pastors were very excited to see Kade, and us to I suppose :-) It is so great to be home!! Words cannot express how we are feeling! Thank you for your continued prayers.

Friday Night

We made it home safe and sound. Kade has had a lot of smiles on his face ever since he got back into his car seat. Hanna was so happy to see Kade back at home today, and he hasn't stopped watching her and laughing. We truly feel blessed to be home.

Home bound!!!

Its official!!! We are just crossing the river. We'll update more later.

Thursday Night (8-6)

Kade is snoozing, and I am packing!! We have accumulated a lot of stuff these last couple of months! I brought the big suitcase :-)

We are so excited to be heading home! We have not told Hanna yet, just in case...I have already burned that bridge once. She will be so excited when she sees him at our house tomorrow. His room is all cleaned up, fresh sheets and all his toys waiting for him.

Although our stay here has been long, we know that others have been here much longer and continue to be here for months, if not years. I overheard a family leaving the other day saying they had been here "A long time, 8 days." At first, I thought "try 8 weeks" then I remembered talking to a mom of a heart baby, they spent the first 8 months of his life here, went home for 3 months, and are now back again. We pray that we will only be back for checkups!

Thanks for keeping up with us, we will continue to post as our journey continues at home in Lincoln. We will be starting outpatient therapy soon, but Kade's best therapy will be being home and trying to keep up with Hanna!

Thursday (8-6)

We have met our goal of 60ml/hour and so far so good. Kade is in great spirits today, playing and laughing. He seems to be more active than the last couple of days which is so fun to watch!

Surgery has given us the green light to go home tomorrow!! Troy and I both will not totally believe until we are driving with Kade in the car! The plan is to take out his central line early in the morning and then we can leave in the afternoon. I have not heard an exact time for our departure, but I am hoping that in 24 hours we will be home!

We are so happy to be home by Kade's birthday! We will keep everyone posted on our departure.

Wednesday (8-5)

Another great night of sleep, for Kade, almost 12 hours! The bench/bed in Kade's room has taken a toll on mine and Troy's neck. Currently Kade's feeds are at 50ml/hour, which is where we will hold for today. Our goal is still 60ml/hour. Surgery is pleased with his progress and has taken him off all meds and additional fluids. Hopefully the central line will come out tomorrow, and we will be on track for home. I will not say for sure that we are going home until we are on the interstate heading West!!!

Thanks again for keeping us all in your thoughts and prayers! You all are always included in ours.

Tuesday (8-4)

We had another restful night, sleeping from 8pm-6am! Things are working as they should inside and we have poop! Yesterday we took full advantage of our wagon time, going on numerous walks and then to the playroom where Kade got to swing and play on the floor, and even some time outside. We will probably do the same today.

Our goal is to get Kade's feeds up to 60ml/hour (2 ounces). Yesterday he was at 20 ml/hour, and they have bumped it up to 30 this morning. In 12 hours we will go up to 40, then possibly progress a little faster tomorrow.

Of course, we are still on Kade time, but from the buzz around here, our days left at the hospital are single digits!

Monday (8-3)

Kade had another great night! Surgery gave the go ahead to start formula into his G-tube at a rate of 20ml/hour. I offered him a bottle of water and he just played with it. We will see how he tolerates the formula this morning and possibly try some table food this afternoon. Before Kade got sick he preferred to feed himself, so we will do it his way!

For pain we are now on a "as needed" Tylenol. We also got permission to go on wagon rides again!!

We will keep moving forward...

Sunday Night (8-2)

The epidural was turned off and remove today around 2 pm, and Kade has been in a great mood ever since. He has been sitting up playing and talking throughout the day. We hope that the Tylenol will be sufficient to keep him comfortable, if not we will have to resort to some type of narcotic for relief.

Tomorrow Kade will probably be started on "clears" for about 12 hours and then we can move onto formula. I would assume that we would have the opportunity to offer him a bottle also in the next couple of days. We eat in front of him all the time, hoping that he will be interested and want to stuff his own face!!

Praying for an uneventful and restful night, thank you all for your thoughts and prayers, we would not be where we are today without them or you.

Sunday (8-2)

The boys had a great time yesterday juggling toys and playing with cars. Kade has really done a 180 since Friday. He is giggling and laughing like normal. Which really helps our moods as well. Hanna and Mommy had a great time at the museum. It was good for them to have some fun time together. Although hanging at the hospital can be boring for some, Hanna has managed to make friends and now rides bikes around the hallways.


Kade is doing so well. He stayed awake from 11a.m. yesterday until 8:45 last night, few just two 10 minute cat naps in the middle. He slept soundly most of the night except every 4 hours when the nurses check his stats and give him some Tylenol. At 6a.m. this morning he was awake and ready to play again. For the most part Kade is just in his bed, but we do sit him up to play with toys and get exercise a few times a day. The epidural is still in and will be removed tomorrow. Until then he is restricted to his room so they can monitor him, so no wagon rides for now. He will get the rest of the staples out from Thursdays surgery today.

We have been praying that after they remove the epidural tomorrow Kade won't suffer from withdrawals from that pain killer as well. We hate the thought of having to go through that again, but we will do anything for this little guy. He will be getting some food in his tummy tomorrow as well. It's time to try out the G button. I hope that since Kade hasn't had anything in his stomach for the last 3-4 days he will decided to take a bottle on his own.

Saturday (8-1)

August has arrived. Looking back it is hard to believe that we have been here since June. It has been a long rough road so far, but we are looking forward to smooth sailing in the near future.

Kade had a good night with a lot of rest. He has been in a good mood this morning playing and talking. I hope that he will take a nap here soon so that he doesn't get over tired and agitated.

Surgery stopped by and said that they are pleased with how Kade is doing. They are still going to hold off on anything in his tummy until Monday. They will remove a couple of the staples from his incision today, and then the rest tomorrow.

Hanna and I are going to the Children's museum today. Should be a good girl's day out, leaving the boys behind to fend for themselves :-)