Four

Today is the fourth anniversary of my sons birth. I mark this date on my calendar but when I think of how old he should be I use his November due date. So he should be about 3 1/2.

I counseled a co-worker today about her recent loss. Her due date was yesterday. She hadn't really thought about it, she has a lot of other emotional things going on in her life. But she did say that since June has come all of her emotions about her miscarriage have returned. I assured her that was normal, that the sadness never goes away we just find a way to incorporate it into our lives. For me, that's having the chance to council other families experiencing loss by working with Share.

My husband took the girls to our sons grave today. He even posted a picture on Facebook. I am amazed at the way he grieves, I just never know what he's going to do. He had Dominic's name tattooed on his arm (along with the girls' names) but he didn't often speak about him. I feel like just recently he has been able to express himself. I'm proud of him that he is able to express his grief.

My oldest daughter had a rough time when I got home tonight. My husband said she had been just fine until then. She was very weepy, and this wasn't just 'I'm tired' crying. This was real sadness, she really misses her brother. Even though she never met him, she has always known about him and she is just now starting to understand what that loss means to her. It brings a whole other level of sadness. As a parent the sadness of the loss of a child is overwhelming, but watching your child be deeply sad over the loss is an emotion without words.

Birthdays

I love birthdays. I think they are so special. This is the day YOU came into the world. Everyone should have a day to be celebrated and feel special.

When my son died in 2010 I had a hard time with birthdays. My son died in June and I completely ruined my husband's birthday in September. I just couldn't imagine celebrating anyone's birthday when my son wouldn't be here to celebrate any. It seemed so unfair. Hell, it is unfair. It has been slowly getting better. Both of my girls are also born in June, making it a very emotional month.

Since both Chelsea & Bethany are born in June, we plan a big party every year. My husband and I love to host a good party. We have had a party almost every year since we moved in in 2008. So last year and this year we have had a theme for the party. Mostly, because it's for the girls, but who doesn't love  theme! Chelsea LOVES pirates, so last year the theme was pirates. We had matching shirts and we all got pirate hats. Some of the guests participated too. It was sooooo fun.

This year we are having a princess and knight theme. I have painted a knight and a princess and cut the head out so the kids can look through and have their picture taken (see pictures). I am in the process of making, cutting out and spray painting shields so the kids can decorate them. We have princess crowns and wands too. I really love this stuff. I try to do it on a small budget, so the picture cutouts are made of cardboard and are held up by scrap wood my husband had hanging around.

My parents never did anything like this for us, I'm not sure where the love of birthdays and themes comes from, but I hope it's something my children remember and look back on and smile.

here I am with Chelsea making the pinata.

This is the design a shield place

my best friend and her husband being good sports.

All of us in the bounce house!

We finally scheduled the hydrogen breath test. We insisted on getting the first appointment for the day so they couldn't get us in until July 1st. The earliest they see patients is 7:45. I'm still skeptical but the doctor managed to talk me into it. I'm worried it's not going to show anything and then what our next steps might be.

Our house is on the market and has been shown twice. No bites so far. I'm hopeful though. I'm really ready to move. I'm also really ready for a new job. I have an interview next week for a job I think I will like. So send some positive thoughts my way.

Hydrogen Breath Test

Anyone know what a hydrogen breath test is? Let me tell you. It is when my not quite 2 year old has to fast from bedtime on. When we get to the doctors office they give her 100mls of lactulose (very thick, sweet liquid). Then they put a mask on her face and she breaths into it every 15 minutes for an undetermined amount of time. Sounds like fun right? Sure, except the first thing she wants when she gets up is almond milk. That's her breakfast and her comfort, the only food item that has not at some point made her vomit.

What does this test for you ask? Bacterial overgrowth of the small intestine. Now I don't think this is what she has going on. As a reminder, she doesn't absorb fat and has been slow to gain weight and grow. My husband and I really believe this problem has been going on since birth. Therefore, to me, bacterial overgrowth is off the table. I will humor the doctor and have the test. As a side note, we also have to drive 2 hours to get the test done.

Super frustrating process of elimination. I will let you know how it goes.

Changes

It's been very stressful around here lately. Bethany is still dealing with stomach issues. We finally found a GI doctor who is taking us seriously. We have made some progress, there was a very scary few weeks where we thought she had CF. Thank God, CF is not what she has. We're still not sure but have made some headway. It's not inflammatory, it's not the pancreas, so now we look at structural issues. All we really know at this point is that she doesn't absorb fat. Most adults would probably be happy to hear they didn't absorb fat but really all food has value, even fat, in moderation. When you don't absorb fat you also don't absorb the vitamins that use it as transport. So her vitamin D level was quite low and we're waiting to here what to do about that.

Also going on in this house, I am looking for a new job. You know, I have been happy in my job until very recently. I was skipped over for a promotion and that stung. It also made me realize that I'm at a dead end here. I need to find something new, a new challenge.

I live in a very rural area so it's very possible we will have to move. The thought of relocating my family has been enormously stressful. As I write this, I just got done creating one of those PROS and CONS lists for each location that we could move to. So far it hasn't helped. On top of that my Dad stopped by tonight to tell me he doesn't want me to move. We had a very good discussion and I'm thankful for that. But now I have this new doubt...

Off to bed for me. Hopefully I get some clarity around my career path and we get some answers for Bethany.

Allergy update

We have been doing a modified GAPS diet for Bethany since December. It has been going well, it's a lot of work and a lot of prep on Sundays for the week. She made very slow progress but I think her gut is finally healing. One thing she really likes is these nut bars, she calls them cookies and that works for me.

They are really simple. 

2 cups of nuts or seeds (we use cashew, almond and sunflower seeds)

1/2 cup oil (we use sunflower)

2-4 eggs

Mix with the food processor to the desired consistency and bake at 350 for 15 minutes.

Bethany had a follow up appointment with the allergist yesterday. Her skin testing was unremarkable, meaning she was negative for milk, peanuts, walnuts and wheat. All foods we have been avoiding and will continue to avoid. Based on her past history with milk the allergist gave Bethany a diagnosis of FPIES - funny name huh?
It stands for Food Protein Induced Enterocolitis Syndrome. Basically, it's a food allergy that is not IgG mediated, meaning it doesn't cause her throat to swell or give her hives. It can however be a life threatening condition because the vomiting and diarrhea that go along with it can be so severe and cause such rapid dehydration that it can cause shock. Therefore, if we want to go forward with a food tolerance test we would have to be admitted to an inpatient unit so we can deal with the symptoms should they occur. A fair number of kids outgrow FPIES by age 3.

And here's a cute story just because

The girls have been battling a runny nose and we are always telling them "don't pick your nose". Tonight I picked the girls up from my parents, as I'm buckling Bethany into the car seat she says "baked nose" so I say to her "I don't know what that means" and just as clear as anything she says "don't pick your nose" I burst out laughing. It's really the little moments like that that make life.

the sandbox

I am almost always taken off guard when I start to picture all three of my children in a place. Recently I had the two girls at a nature center and they were playing outside in the sandbox. All of a sudden it hit me - "there should be three children here". And then the questions start "which one would he look more like", "what would his personality be", and so on and so on. 

I miss him all the time, but there are times it just hits me like a ton of bricks. 

I recently heard my coworkers granddaughter is in the NICU and is very seriously ill. I feel extremely blessed to be able to offer assistance to her family and yet sad at the same time to have that skill and ability to feel that pain. It is both a gift and a curse from my son. I am eternally sad to have lost him but eternally grateful to be able to help others. 

Since my son was not in the NICU that is not something I feel comfortable talking with families about. However, I am blessed to know a very special woman named Penny whose son was in the NICU. I contacted her right away and she is willing to talk to the family as I knew she would be. This network of bereaved parents I have become part of are an amazing, graceful group of people and a testament to the resilience and kindness of humans.