One Year Ago...

Our little boy became very sick
We sent him to surgery to repair a diagnoses of Intussusception
We thought the thought of 4 days in the hospital was an eternity
We watched our baby grow weaker as the night progressed
We were on our way to Children's Hospital via Ambulance
We watched our baby stop breathing as we approached Children's
We watched our baby go back to surgery...again, and again...
We watched the miracle of what we see today in our healthy, happy boy unfold before our eyes.

"Be still in the presence of the lord and wait patiently for him to act."
Psalm 37:7

Thank you to everyone for praying for our boy. As you can see, our little miracle is doing great!

Just a Boy at Heart.

Sorry for the delay on updating the blog. But as you can see from the video below Kade keeps us busy laughing as he discovers adventures and thrills around every corner. These days we spend most of our time chasing after him while finds new things to climb on and get into. He is just a boy at heart.

A few weeks ago we visited the UNL Stadium for a wonderful tour and lunch put on by UNL Dance Marathon. Dance Marathon is a wonderful group of University of Nebraska students that raise money for the Omaha Children's Hospital. During our time at Children’s we were approached by one our daycare teachers about Dance Marathon. She told us that she had been following the blog and was involved with a group of students that raised money for the hospital by dancing for 12 hours straight. After all we had seen and been through at Children’s Hospital we knew that we wanted to get involved and give back. UNL Dance Marathon works with families that have spent time at Children’s to help the UNL students understand the need and reasons behind the fundraiser. Back in October of last year we were paired with 2 Family Representatives that got to know us better and help us in the process. The UNL tour was an great opportunity to talk to other families that have spent time at Children’s and hear amazing stories of what wonderful things they can do. If you would like to know more or get involved you can visit the UNL Dance Marathon website here.

http://dm.unl.edu

The dancing starts on February 19 at 8p.m. and goes till 8a.m. That night we will get to share our story with a very large group of UNL students that will be dancing for 12 hours straight at the Union Ballroom all to raise money for a great cause.


God's Blessings

Merry Christmas and Happy New Year!!

Dear Family and Friends,

This past year has given us the chance to learn a lot about ourselves, our family and our faith. Everyday gives us more reason to be thankful than the day before. Daily, we think of all of those who touched our lives in some way this past year, be it and old acquaintance, a new friend or our loving family. Our hope for the next year is to touch your lives in the same way you have touched ours in our time of need.

We want to express our family’s gratitude to all of you. Our family, friends and co-workers were such a blessing this past summer while Kade was ill. We could not have gotten through our terrifying ordeal without all of you, and we are eternally grateful for you all.

To the wonderful staff at Children’s Hospital, thank you for saving our son’s life. Your passion, skills and knowledge came through everyday, and we knew that you were doing all that you could to make sure that Kade came home again. Thank you for being honest with us during those times of uncertainty, and including us in decisions. You all will always hold a special place in our hearts.

To the Rainbow house for giving us a home away from home, and for providing us with a meal, a hug or a prayer when we needed it most. Hanna remembers her books from the cart, and the playground where she didn’t get much time to play. Thank you for being there for us.

To Dr. Russell and Complete Children’s Health staff, thank you for being so dedicated to our family. Your gifts, visits, and phone calls showed us that you saw Kade as more than a patient. We look forward to the coming years with you as our physician. We also want to extend a thank you to all of the wonderful therapists at Madonna for their work with Kade.

As 2010 approaches, we enjoy watching both Hanna and Kade thrive. Hanna is busy growing into a young lady. She is definitely her own person! She is already excited to be turning 5 in April, and starting Kindergarten in the fall.

Kade is now 16 months and healthy as can be! You would never know that he was so sick unless you see his scars. He is walking, eating well, babbling, and developing on track like the rest of his peers. He is beginning to hold his own when Hanna “loves” him a little too hard or just plain teases him. He has even instigated a couple spats when Hanna has something he wants!

In closing, we want to say thank you again for everyone’s generosity, and prayers for our family. We hope that you feel as blessed as we do, as we celebrate our Lord and Savior’s birth, and in the coming days of 2010.

Merry Christmas and Happy New Year,

Troy, Allison, Hanna and Kade Loseke

Walking

Kade is offically walking! He is so cute with his new found freedom. He continues to eat well, and is on a good growing curve. He is also starting to talk a little, mostly saying Da-da and Ma-ma, both of which are beautiful sounds to Troy and I. Attached is a photo of Kade chillin' at his uncle lodge. He was quite relaxed until Hanna came and pounced on him :-)

Well Bust My Buttons...

Kade no longer has a button!! Yes, we have a button-less boy. The surgeon removed it yesterday and all is going well. It is only covered with some gauze and a Looney Toon band-aid. If by chance the skin doesn't close up by Monday, we will have to go in and have them place a stitch in. It is not leaking like they said it might so we are thankful that!
Kade still is hesitant about walking. He will take steps, but then drops down and crawls. He does have bruises to show is willingness to climb though. He is always so proud when he reaches the top of whatever he is conquering!
We had fun over Halloween, Kade was Roo from Winnie the Pooh and Hanna was a bride. We attended a gathering at the Omaha Children's museum that was hosted by a group called Dance Marathon. It is a group of college kids that have a 12 hour dance marathon for Children's hospital. It was fun to play and meet other families and hear their stories. The event will be held on February 19th, but the have gatherings every other month. Our favorite Surgery resident, Dr. Worth met us at the museum and she was so happy to see how well Kade was doing. We are thankful that our encounters with Surgeons are strictly social these days!!
Keep checking on us and I will try to post every now and then!
Thanks again for all your prayers!

Routine

Sorry for not posting for a while. I have been back to work full time for the past couple of weeks, and we are adjusting to our old routine, which we are so thankful for! Kade is doing exceptionally well with eatting! So well that we have not had to use the feeding tube at all this week. The surgeon said that if we do not use it for 3 weeks, we can take it out! Last week we did have to go back up to Children's to have the surgeon look at the area around the button. Troy and I noticed it was hard and something was almost poking through the skin. Turns out it was a stitch that had come undone, and it was nothing to worry about it would eventually dissolve. The surgeon stated that if we saw something blue poke through the skin we could just trim it...I said that we would just come back for him to do the trimming!! So far nothing has poked through and the area is getting softer.
Hanna was not happy when we pulled into the garage at Children's. The first words out of here mouth were "What are we doing here!?" I explained that they wanted to look at Kade's button and that we were ALL going home together TODAY! She accepted that and we were off. She didn't skip a beat when it came to the elevator, and was all over the Drs and nurses when we stopped by the PICU to visit. Everyone was so excited to see how well Kade was doing, and Dr. Trempher got a snapshot with his iphone.
Kade is doing very well at daycare, and Hanna just loves him to pieces every chance she gets. Kade has taken a couple of steps for us, but still perfers to crawl.
I will try to post weekly, but as the saying goes, no news is good news!
Thanks for checking on us!

October 5

Kade is still doing great with his eating! He struggled with drinking a little, but has overcome his initial reaction to automatically spitting it out. He loves to feed himself, but has also become more accepting of being spoon fed, which really increases our food options! He was eating a lot of peaches, bananas and puffs for a couple days until I was able to feed him regular baby food with a spoon. We are working on decreasing the need for tube feeding during the day, which allow for more freedom to move around.
Speaking of moving around, Kade has taken a couple steps!! He is definitely getting brave, and he has the bumps and bruises to prove it! He has a lot of friends as daycare that are walking, so I hope that helps encourage him.
Kade will start going to daycare 3 full days a week. I am back at work and enjoying getting back to our regular routine. Hanna is really happy to have here brother back at "Hearts" with her. Their classes are outside at the same time, so they get a chance to interact with each other.
We are looking forward to a month without Dr appointments! Our next visits will be in November when we see the surgeon for our followup, and Dr. Russell for Kade's 15 month appointment. Thank you for continuing to check on Kade's progress!

Eating!!

We have been very busy at our house these last couple of weeks, a lot has changed!! The best news is that Kade is eating!! He is really into finger foods and wants to do it all himself. We still give him formula via the feeding tube to make sure that he meets his nutritional needs.
The last time I posted, Kade had just had another swallow study. The days following that he was vomiting 3-4 times a day. We treated it as a virus, running Pedilyte continuously for most of the weekend. Then on Sunday night we offered him some banana and he started to put it in his mouth and swallow. He didn't gag at all! We were so excited we ended up giving him the whole thing! He has been eating ever since!!
Today is Kade's first day back to daycare and my 2nd day back to work. I have only called daycare twice so far :-) When I spoke to the teacher after lunch, she said that he had fun when they went outside and he ate a good lunch, both a big relief for me! We will continue to go to Madonna for therapy 3 days a week for now, so we are easing back into work and daycare slowly on Tuesdays and Thursdays.
Thank you to all of you for your continued thoughts, prayers and support.

Wednesday (9-16)

Yesterday's swallow study showed that Kade is doing better controlling food before swallowing. We will begin to experiment with nector thick liquids as we work on trying to make him feel hungry. It is hard to meet his nutritional goals, and try to make him feel hunger, there are not enough hours in the day!

Yesterday Kade also had his first day of pool therapy. He really enjoyed it, slashing and kicking. Today at therapy, he impressed them by crusing around furniture. He is on the right path to walking, which is wonderful because my back is killing me!!

Monday (9-14)

Things are great here at the Loseke household. Kade keeps amazing us with his fast recovery to age appropriate activity. He is getting into everything! We love it!!
We will be going in for a modified swallow study tomorrow morning. Kade did very well last night with a sippy cup of thickened water. Multiple times he took drinks and swallowed without gagging. This morning he took about 5 bites of thickened formula that I fed to him with a spoon without gagging. We are very pleased with these small victories! We will post the results of the new study when we know more.
Thank you to the Random Acts of Kindness Angels for your generous gift to our family, it is greatly appreciated.

Friday (9-11)

Thank you to all of you for your Birthday wishes to me today. The best gift has already been given to me, to have my family back together under one roof!! We continue to be blessed with Kade's recovery. He can get from the kitchen to Hanna's room in approximately 5 seconds! If he sees her door open, you can guarentee he is heading that way. The other night she asked how to spell "Kade stay out of my room!" Obviously, everything is pretty much back to normal around here!

Kade is doing well with tastes of food. He continues to accept more into his mouth and has success with swallowing and not vomiting. The only way to make your swallow stronger is to swallow, so that is what we work on. He doesn't fuss as much as he used to when we put him in the highchair, so that is a great sign that he is accepting the "process" of eating. We will be going in for another swallow study next week to see if there are any changes from the inital study done at Children's.

We did finally get approved for Medicade and for the Aged and Disabled Waiver! Medicade will allow us to get the extra feeding and swallowing therapy needed, since we were running out of visits from our primary insurance. LPS will also begin to work with Kade, offering Occupational Therapy along with feeding and swallowing. Thank you to all the Taxpayers, we will not disappoint you :-)

Thanks again to all of you for keeping up with our little miracle!

9-3

Kade is crawling...everywhere!! His only limitation is his "cord" when it is hooked up for feedings, so now it is more like a leash :-) He is enjoying his new found independence, and the rest of us are getting back in the mode baby proofing the house again!

Our therapy schedule is now 3 days a week. Kade is doing well with tastes of food, but still not swallowing without difficulties. We continue to include him in all meals by putting him in his highchair and giving him a spoon and a dish of something such as pudding, pureed peaches or rice cereal. He usually just makes a big mess, but does end up getting a little in his mouth via covered fingers. We are grateful that he allows items into his mouth, as that would be a huge challenge to overcome.

I recently attended a group for families that have children with feeding difficulties, and learned a lot just from one meeting. In today's society, the problem is usually eating too much, and people understand that, but when a child doesn't want to eat it is very misunderstood. Eating is just another thing that we all take for granted. In the first year of life, there are so many different things going on in the mouth and brain that make eating possible. We were fortunate that Kade developed most of the skills necessary to eat before he became ill, whereas a preemie in the NICU for months may never learn to eat without extensive therapy.
Kade had tubes down his throat for many weeks, a machine breathing for him, and nutrition going directly into his blood stream, all saved his life, but also made his little body forget how to do some things. Obviously, the physical stuff is coming back quick, but it will be a while before he is eating enough by mouth to satisfy is daily nutritional needs. We pray daily that as he becomes physically stronger, the rest will fall into place.

Home health came again on Tuesday and Kade weighs 27.9 lbs!! We do not see Dr. Russell again until next week, but we are going into see a PA today for a cough/cold he has. Hopefully his ears will be clear and we will just have to ride it out.

Last night we went to the fair to the Newsboys concert and ran into one of our favorite Respiratory Therapist from Children's. We had made a connection in the hospital, so it was a blessing to catch up with her and meet her beautiful family. She gave me the bracelet she was wearing, which bears a beautiful verse I know a lot of you are familiar with, and it says it all. Thank you Chantel.

"I can do everything through him who gives me strength" Philippians 4:13

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!