On the road again...

Another successful trip to Portland

 

Last Thursday we headed to Portland so Kyle could see his lymph edema bandaging PT. Her name is Mary. Kyle has brought several challenges and firsts for Mary, on our last trip Mary stated that Kyle was her first patient to wrap his legs around her arms while she was bandaging him. Kyle is the first baby with lymph edema that she has seem, she usually sees adults with this diagnosis. She has been contacting people all over the country trying to help us help  Kyle with his lymph edema.

This visit Mary helped us work on how to keep the bandages on Kyle for longer. We are aiming for 3 hours, and usually he was pulling them off or they were just coming off from him crawling and playing after about an hour. Also we were not seeing a lot of difference in the size of Kyle's hands, so now we are doing a modified almost baby proof double wrap. It uses twice as much wrap, and we added tape. It takes me almost twice as long to do and that part Kyle is not really impressed with, what almost 10 month old likes to sit still for 20 min. while his mom wraps his hands up. But other than the sitting still he is still not bothered by them and keeps playing just like when he does not have them on. I am also trying to increase the amount of lymph massage I do with Kyle everyday. He really enjoyed the pool at the hotel (which is good for his edema), hopefully where ever we end up moving will have an indoor pool that we can use a few times a week for therapy. The other first for Mary was watching Kyle take his bandages off with his teeth, he finds it very assuming to bite and pull at them, the tape is helping with this. So here is my first time doing the new wrap, luckily Wade was home and helped hold, today I got to do it alone, but I am getting faster, but of course so is Kyle.



 

 

Lucy got to go on this Portland trip with us, she was very excited to stay at the hotel, swim in the pool and play with Mommy, Daddy and baby Kyle.

Here they are getting ready to do go down to the pool. Lucy loved to go back and forth between the hot tub and the pool. Finally on our 3rd time to the pool I convinced her that once Mommy goes into the hot tub Mommy does not want to go back into the "cold pool". Kyle also loves to splash in the water and watch other kids, including his sister in the pool. We definitely have 4 water babies.

Always on the go!

I got to choose where we ate lunch, we have never eaten at the cheesecake factory so that is where I picked. It was fun, their menu is HUGE so it was really hard to pick. After lunch we ordered cheesecake to go, and ended up having it for dinner that night :)

It looks like we will get a few weeks to stay home, YEAH! Our next appointments up in Portland are not for about 4 weeks:)

Thank you for the prayers for Kyle and our family. Please pray for patience as we wait to find out where we are moving with the coast guard this summer. And that God will hand pick the perfect doctors for Kyle, and the right place for our family to call home for a while.

 

A 5 year old Birthday!!!

A 5 year old BIRTHDAY!!!

 On our last trip to Portland (two weeks ago) Delaney got to go (the kids have been taking turns being the big kids that goes) We did a little above and beyond the normal trip to celebrate her birthday! We went to the zoo one morning before Kyle's appointments. It was 35 degrees so lots of the animals were not out but we still had a lot of fun, Delaney ran around the zoo for about two hours!

 Delaney and Daddy

 We got to see the new baby elephant, Lily was born Nov. 30, 2012

 Riding a lion

The following weekend we celebrated with a party with friends at home, Delaney wanted a horsey party, so that is the theme we ran with.

Horsey Cake

Riding the saw horse

Ye Haw!

All the kids!

Beating the pinata

Daddy helping Delaney build a new Lego set

Mommy and the birthday girl

Cake!

Also that night Josh had his blue and gold nigh for cub scouts. He earned his wolf badge among other awards, he has worked hard and really enjoys cub scouts.

Getting his badges

My little wolf scout

 Kyle and Daddy hanging out

We had a little scare last week with Kyle, he got a tummy bug and was not eating and or keeping anything down. When I took him in to his Doctor he was very dehydrated and had lost almost 2 pounds in a week, there was talk of heading up to Portland for treatment, but he bounced back the next day and started keeping things down slowly, at last check he was back up a pound and a half and feeling a lot better, thank you for all the prayers.

Kyle is doing well with his arm bandaging, but he is sooo active that they don't stay on as long as his PT would like. They do not slow him down at all, he is starting to pull up to his feet! He is a busy boy who is always on the move!

 

So I have thought about blogging off and on but never did, but when Kyle was diagnosed with intestinal lymphangentasia in November 2012 I figured this would be a good way for friends and family to be in the "know" about what we are up to and how Kyle is doing. It will also serve as our time line of having a child diagnosed with a rare condition and learning how to cope with that diagnosis as a family. So here we go...

Kyle was born in April of 2012, he was a repeat c-section and decided to make his appearance into the world different than his siblings by being breach. He came peeing and screaming in to the world and all looked good. He nursed like a champ from the start and LOVED to nurse, the RN's taking care of us called him the "booby boy" because that is where he lived his first few days, eating. Kyle was born with huge hands, it was something everyone commented on but then it never went further than that. For those in the medical world they looked like he had IVs infiltrate in both hands, they were really puffy. But he passed all his test and was growing so after 3 days in the hospital they discharged us and we headed home.

And so life went on for about 6 months, Kyle was happy (for the most part, he had "colic" or so we thought so evenings were hard) and we were happy, and we got very use to everyone always saying "oh look at those hands" or "wow he has got big hands". In my heart I felt like something was not right but he was growing and thriving and smiling so what more could a mom ask for.

Camping at Crater Lake

Halloween 2012

Then came Kyle's 6 month well baby check, I brought up his hands again, and commented on how he had a big upper body and little legs and feet, his FNP (who is wonderful) also noted that his belly was a little distended and he was not meeting his milestones like rolling and starting to sit up with help. So she gave us orders to go to the local hospital and get an ECHO and and ultrasound of his abdomen done.

6 months old

Kyle and I went down to the hospital to get the test run on Monday November 5, 2012. They did the ultrasound first, I remember the tech telling me he looked fine and I just worried to much. The Echo was more difficult because he was not use to babies and wanted him asleep and not to move, it took a while but I got him to sleep and we got the test done. That afternoon I heard nothing and with the ultrasound tech's voice running thru my head I figured I did worry too much. Was I looking for a problem that was not really there. Did my years of nursing have me on a hunt for something that did not exist and here I am putting my perfectly fine 6 month thru tests he did not need?
Then I got a phone call from Kyle's FNP Tuesday morning at 10:00 that changed everything. She first asked if Kyle was OK, I said he was, nothing different than when she saw him. She told me that the tests showed that something was going on with Kyle, her voice was shaky, she said I needed to get him down to the hospital as soon as possible, there they would fly him to the children's hospital in Portland. She said I needed to be down to the hospital in an hour or less.
4 Kids+
Husband out on a boat doing training+
Hospital is 40 min drive away+
my hands are shaking so bad I cannot dial phone numbers
Equals a logistical nightmare.
Kyle, Wade and I made it to the hospital at just at an hour. The other 3 kids went to a neighbors house until my mom could make it down. And then we got to hurry up and wait. They were expecting us, no one really wanted to look us in the eye, they asked lots of questions, drew blood, and ruled out things. First it was liver failure, then his blood work came back and they said his liver was slightly enlarged but fairly normal. Then it was kidney failure, then that too was ruled out. They were going to fly us up to Portland, then there was talk of an ambulance. 4 hours later we were discharged with orders to drive Kyle to Portland to find out what was going on. His liver and kidneys were fine but he had lots of free fluid in his tummy and something was wrong.
So we packed as best we could and headed 340 miles north to Doernbecher Children's Hospital in Portland Oregon where Kyle had a bed and a whole group of doctors waiting for him. We arrived at 1 am on November 7, 2012.

Hanging out in his crib

Kyle with his IV in his foot

Kyle with his IV in his arm (he had 2 IVs while admitted)

Kyle with MD Autumn and MD Andy

Resting in bed with Daddy

Sleeping in the wagon, we went for lots of walks in the wagon

Saying good bye to Kyle's floor

A week, 2 ivs, a catscan, an upper and lower endoscopy,an echo, lots of blood work, tons of stool samples, countless doctors and nurses, a complete diet change, a little stress and many tears later we had a diagnosis and a treatment plan. Kyle has congenital intestinal lymphangentasia with a protein losing enteropathy. He also has bilateral arm and hand edema (he does not just have big hands they have lots of extra fluid in them because his lymph system does not circulate the way it should. We had answers, we had a name, but we also had the great unknown of a very rare disorder and lots of questions. One good resource for those who want more information on this condition is littleleakers.com.

Since our first hospital visit we have had ups and downs, first it seemed like Kyle got very bug and just could not get over them, decreased immune function comes with everything eles. Then he did not like eating soild food. Now we are struggling with having him eat enough between the monogen (his formula) and his baby fruits and veggies. He is monitered closely for growth and development by his FNP, Gastroenterologist, nutrionist, and 2 diffrent phyiscal thereapists. We have our days or weeks but over all he is doing great and caughting right up with his delevopmental milestones that he was behind in. We have just recently started to do some lymphedema bandaging of his hands and arms. He does not seem to mind the bandages when they are in place, he just doe not like to sit still getting them put on.

 

Heading home December 2012 hospital trip

Feb 2013- playing nurses

Don't know why I can not turn this one, but this was our first hand bandaging