Tuesday, July 28, 2015

Summer Fun

 Our summer has not been normal and at times it hasn't even felt like our usual carefree summer we have still managed to have some fun.  We are learning a lot about seizing the moments we have.  A few recent highlights-

Titus thought getting a matching bracelet as his bunny was pretty cool. Children's hospital is amazing.

After a long day at the hospital we went bowling. It was one of those moments when it would have been easier to say "let's just go home" but the kids wanted to bowl and ended up being a fun time.

 I turned my back for a second while the kids finger painted and the next thing I know they are covered in it. There only explanation was "you said it was washable."

 The drive in was on our summer check list. And Titus told us he really wanted to watch a movie in the car. There aren't many kid movies this summer so when we saw that the Shelton drive in had Minions playing we packed up the car and drove all the way there. Gideon slept at Grandma's and we partied late into the night.
 Garret and Titus have been special friends this summer (and always). Garret has been teaching him to ride the two wheeled scooter and shoot a bow and arrow. They have played legos a ton together and they usually pick each other for partners for jobs. Garret is extremely patient with Titus.

We bought side walk paint before school even got out and finally used it. At first we tried to keep Gideon out of it...then we decided it was washable and just watched him have fun.

 After the sidewalk mess Tyler sprayed the kids off with the hose. Titus's facial expressions were so classic we had to snap some pictures. When he is wearing just his underwear he says he is in his "London's" (because of the I see London, I see France, I see Titus underpants saying).

 There has been other fun too. The boys are at scout day camp this week, we have read books together, played outside, done art projects and gone to the playground. I am grateful for the little moments- the ones when they are all together and happy.

Wednesday, July 22, 2015

Titus Update

I'm not sure how to describe the last month of our lives- busy, emotional, crazy etc. It has almost been one month since Titus was initially taken to the hospital with hypoglycemia. After spending a couple days at Children's hospital he was initially discharged and his episode was considered a fluke. Then a few days later a lab came back abnormal. We hurried back to the hospital and he was diagnosed with Addison's disease.

Addison's seemed daunting. Three + pills a day for the rest of his life. A constant battle of trying to find the right dosage, the fear of missing a dose. Addison's is considered life threatening. Hearing that our little Titus had something life threatening was so scary. We worried and researched and even though we wanted to change it we started to accept it.

Then a few days later the labs they had taken in an attempt to find the source of his Addison's started coming in. His blood was tested for infections, his thyroid was tested for autoimmune problems. Celiac was ruled out, his liver was fine, he wasn't anemic etc. Every test came back good. There were still a couple tests out but they were for diseases that were so rare we tried to just celebrate that everything else in Titus looked healthy.  Looking at him he seemed healthy- it was hard to believe anything else could be wrong. There were times I even wondered if they had the Addison's wrong. He just seemed so fine.

Then about a week ago his long chain fatty acid test came back. It was abnormal. ABNORMAL. They told us on a Monday and let us know they would want to work on scheduling us for more tests. After getting off the phone I called Tyler and we started looking into what this could mean. Adrenoleukodystrophy came up. We researched it and our hearts sank. This was worse than anything we could have imagined. For a couple days we read and read and hoped that maybe they were wrong or something else could cause him to have abnormal results. On Thursday I talked to the doctor again about upcoming tests and asked what the chances were he had it. Hoping they were small. She said we could assume he had it and that now the goal was to find out the progression of the disease and make a plan of attack.

I called Tyler again and we let it sink in. We put our brave parents faces on whenever we were around the kids but at night we cried. We worked through possible scenarios. We prayed. The days drug by and even though we did not want the test days to come- we did want them to come. We wanted to know more.

Monday Titus had an MRI. He has started closing off as soon as we walk into a hospital. Bright eyed Titus hates the hospital and pretty much refuses to do what they ask him there. Originally he was a good sport but each visit he has panicked more and more. The people at the hospital are so nice and they always find a way to get what they need.

This time I was glad that my Dad came along because there was no calming him down. Sadly the little man was put under while throwing a major tantrum. It was agonizing seeing the fear and anger in his eyes and having to go ahead with it anyway. Luckily he woke up happy to see us and did seem to be holding a grudge. He was so cute when he woke up. He got a popsicle and was trying to eat it with his eyes closed. Kept missing his mouth. He also thought it was pretty cool that his stuffed animal got a bracelet too.

No results were read monday. We went home and tried to be normal. We put on a pretty good act for the kids but couldn't sleep all night. Tyler and I both felt physically ill the days leading up to these tests. The lack of sleep, the stress it really did affect us. I lost weight being pregnant (something that doesn't happen to me), Tyler was convinced he had an ulcer. I had never experienced the physical effects of stress and worry like I have over the last few days.

Tuesday we woke everyone up very early and took them (and my Mom) to the hospital. We were super early but better early than late. We waited. We ran into someone from our year in Yakima and listened to the trials she has faced with her little son. We watched other parents with their children. It's a strange place because there are so many kids with sicknesses and injuries but it has a good spirit about it and everyone is so nice.

Finally we were called back in and to our surprise it was a social worker we met with first. We were both on the brink of tears and worried that they were prepping us for bad news. If his MRI showed too much damage there would be nothing they could do. It was our biggest fear. At last the doctor came in and said his MRI was clear. It felt like we were breathing for the first time in weeks. It was clear! Then we went on and discussed the long road ahead. Luckily we had done a lot of research and were not shocked by what we heard. We know that there is a high chance we will have a bone marrow transplant in the future. We know he still has the disease and it will effect his whole life. But we had also done enough research to know that this visit could have been a death sentence and we left feeling like we had hope.

Titus will be going on a special diet and supplement. He will have MRI's every six months and if there are ever any signs of damage we will have to be ready to act fast. He will continue to take medicine for his Addison's disease. We will treat him normal but ALD will be there always. It's a cruel and harsh disease.

It's genetic and we are in the processes of pinpointing where the mutation occurred. Titus and I both have labs out to find out if I am a carrier. If I am than the kids have to be tested. It scares us to think about that possibility. We won't know for about six weeks. We are going to bank the babies cord blood, there is a chance the baby could match Titus and his blood could save him later in life. It may not match but it's worth the chance.

This morning we are back home. We finally slept last night. We know that the future is different now and yet this was the first morning in weeks that felt normal.

We have learned a lot over the course of the last month-

We feel like we should earn an honorary degree in Endocrinology and genetics.

We were reminded how blessed we are to be part of our church. The peace that comes from that was felt often.

I have often wondered how Tyler and I would handle a crisis. This month has been a crisis for us and we stuck together. We relied on each other.

We were reminded that moments count. All of them. There were lots of sweet tender moments over the last month. And there were crazy moments. When the house was wild we were just glad that Titus was here part of the ruckus. 

We gained empathy for people living in uncertainty, people going through crisises, people that are suffering from stress.

We felt loved. We haven't told a lot of people but those we have reached out and their love was felt. Several times we had to ask for help. Which isn't easy for us but it was wonderful to see how eager people were to help.

We learned that miracles are real. Yes, the disease is here. Yes, it has the potential to devastate our family- but a doctor caught it and they caught it early and now we have a chance to fight it and fight it we will.

***Anyone that managed to read this all the way through I would encourage you to do some of the following-

Sign a petition to help get ALD put on the newborn screens in every state- boys can be saved if they are diagnosed early enough. There is going to be a vote on this soon and the chances are better for it to pass if we speak up.  https://www.change.org/p/save-the-boys

Let anyone you know that is pregnant that they can donate their cord blood for free. It usually gets thrown away. It could save a life- donate. http://www.babycenter.com/0_donating-cord-blood-to-a-public-bank_1356495.bc

A lot of people offer to be a match for Titus if the time comes. Most people don't find a donor that way. They either find it from their family or from the donor registry. It's usually free to join the registry and once you do if you are ever a match for anyone you could save a life. Someone like Titus. http://www.deletebloodcancer.org/en/register?utm_content=4441168487&utm_term=can%20i%20donate%20bone%20marrow&utm_campaign=Donate+Marrow&utm_source=bing&utm_medium=cpc

Monday, July 20, 2015

Saturday Hikes

 Tyler was out of town at a dental conference all weekend. Dan and Heather decided to come up and spend the day. The kids made a list of fun things they wanted to do this summer and because of health things we haven't crossed much off. Saturday we were able to add a check mark to our list. Dan took Ridge, Garret, Spencer and Adele for an outdoor adventure. Heather and I took Titus and the babies for a mini-outdoor adventure.

The kids were thrilled to have company and they have been talking about how much fun they had ever since. It was a perfect way to spend our Saturday!

Sunday, July 19, 2015

Baby Gender Reveal

 Tyler and I decided that baby number six would be a surprise. We made it through the first ultrasound without finding out. Then we had a second because I was measuring big and we still didn't find out. Unexpected circumstances called for a third ultrasound. This time we found out. Our surprise came early but we were all thrilled to find out more about this new addition.

Tyler was out of town when I had the ultrasound. Thanks to modern technology he was able to get the news right away. Tyler joined us via his phone when the kids found out. I made muffins and they got to eat them, whoever bit into the one with color got to announce the gender.
 They were pretty excited.
 In fact Titus stuffed his mouth as fast as he could so he could grab another one.
Turns out Garret bit into the lucky muffin. He proudly announced that baby six would be a BOY!  We love our little boys. Our family will shortly be made up of FIVE boys and ONE girl. There were no tears this time. In fact they all talked about it for a few minutes and then moved on.

Our house is destined to be a noisy rambunctious place. But anyone that has been here knows it's full of lots of fun and love.

Saturday, July 18, 2015

Grandpa Camp 2015

 Grandpa camp was last weekend. It was such a great weekend spent with family. This year it was Critter Camp.  My mom timed it perfect and had chicks hatching in the incubator for the kids to watch. The kids caught snakes and slugs and bugs. We did a scavenger hunt, went to the beach, guessed on jars, climbed trees, built things in the shop, launched water balloons, ate dutch oven cooking, had a talent show etc.

It has been a busy crazy summer for us. The weekend spent with family was a nice break from real life. We feel blessed to have the family we do and we are so grateful for the memories we made at camp.