Tuesday, June 10, 2014


The cycles and months move on and still we wait for any sign of a fourth child to be added to our family. It's kind of hard to talk about, not because I mind emotionally charged conversations, but because it is hard to explain how we feel. 

Plain and simple, our heart's desire is to have a fourth. That being said, we also place our trust in God's plan for us. We know and rest in His journey. I, personally, have had a hard time reconciling these two things until a few months ago, which I briefly posted about. I wondered how I could trust God's plan and have my own desires at the same time. I was graciously reminded of Jesus and His sacrifice on the cross. While Jesus willingly went to the cross, taking on our sin, He did appeal to His Father to lift that burden off of Him. Jesus asked for their to be another way and He even cried out to God, asking why He had been forsaken. 

I have found such comfort in my despair because of this reminder. If Jesus can ask for deliverance in the greatest act that ever took place, but still yielded to God's will, then surely I can appeal for my desires, while still honoring God. I think I felt disrespectful before, like I wasn't being submissive enough if I was asking for what I wanted which seems to be out of alignment with God's story for our family so far. 

I still struggled with this, trying to be proudly stoic about our refuge in God while we try to figure out His plan for our fertility as if I was perfectly balanced towards accepting our three blessings or welcoming another. However, as I approach some potential answers in the coming weeks, it became clear to me that I still cling to the idea of a fourth for our family as emotions took over when my words said otherwise. As I cried at the thought of our family expansion being over, I have been reminded of how much I would love another, even though I am so happy with my three. I think it is an odd and awkward place in fertility struggles, already having a family and wondering why a pregnancy hasn't occurred again. In a way, I am grateful for my true emotions to come forward, for my passion for another child to present itself, because I was starting to wonder if God was changing my heart in an attempt to prepare me for this chapter to come to a close. While He may still choose to write an ending to that chapter, I feel better knowing that my heart is still in it. 

I don't have a lot of information about the scientific and health reasons for our lack of success at the moment and I am not sure how much we will share on that front, but I am glad that I am working with my doctor to see if we can figure something out. We have also been appreciative of prayers and support from so many people in our lives, for general and specific things thus far. 

We feel honored to have been trusted with three wonderful children so far, clearly examples of God's handiwork. We hope that there remains another for us. 

Zoo in the Rain

Our zoo membership has been one of the best investments we have made for the past two years. We splurge on the larger membership so we can take friends with us, appreciate the free parking, and love the ability to load up the stroller with snacks so we can work our way through with the kids. We went to the zoo yesterday with Crystal and her boys and missed the chance to see the Tigers up close due to the rain. We were able to take shelter from the hardest rain and enjoyed the cooler temperatures brought on by the showers throughout our visit. Plus, the kids loved playing in the "splash pad" made by God since the other one was closed due to non existent thunder. They played in the rain and splashed in puddles throughout the zoo. 

Friday, June 6, 2014

Hashimotos Disease

One of the preventative measures that is taken for kids and adults with Down syndrome is a yearly blood draw to check a number of things. One of these things that they keep watch over is the thyroid. There is a strong correlation is individuals with Ds and several different thyroid issues and because we want our kids to be healthy (just like their typical peers), we make sure that aspect of their body is functioning properly. We were told after Johnny's one year appointment that his is not functioning right which led to an appointment with an endocrinologist, an ultrasound of his thyroid, more bloodwork, and a follow up which happened this week. 

Through this, Johnny has been diagnosed with an autoimmune disorder called Hashimotos. It's a very common autoimmune/thyroid issue and it has some correlation within the Ds population. There is a lot of complicated factors about this, but essentially, antibodies in Johnny's body don't recognize his thyroid or part of his thyroid as belonging to him and they attack in. Currently, his thyroid is handling it well, but it causes the thyroid to not work as well creating a hypo, low functioning, thyroid. Because his body is maintaining decent hormone and thyroid levels for now, we can stay off medication as long as we keep an eye on him and do regular blood work (twice a year for now). The doctor gave us several signs to look for (extreme weight gain, constipation, lethargy, muscle weakness, dry skin) and took more blood to see how his levels have fluctuated since January. She also asked that we avoid large amounts of soy, specifically straight soy like soy milk, tofu, edamame, and food products made largely from soy. This is fine for us since we don't eat a ton of straight soy, but at some point we may need to keep a closer eye on products containing soy or his diet in general. 

We are grateful that he is doing well considering, and we are glad for easy solutions to make sure he is healthy. There is a large concern for weight gain in the Ds population and I feel that helping control his thyroid and diet will make a large impact on him being a healthier version of himself. He was pooped after his appointment and passed out in the stroller!

Thursday, June 5, 2014


We always expected a few rounds of tubes for Johnny. One of the many physical manifestations of Down syndrome is smaller ears and ear canals which can lead to fluid retention and hearing issues. His first set of tubes went well, but we expected them to last longer than six months! 

The timing was perfect for our follow up with our ENT, one of the tubes had just started to dislodge and while there was fluid in his ear, he didn't have any infections yet. When the tubes were placed on Tuesday, the other tube had stopped working and fluid was gathering in that ear as well. We are grateful that our follow ups and checking in with our doctor on a regular basis have helped us avoid infection. 

Johnny did even better on this go round, they apparently only administered a teeny dose of anesthesia because he was wake and mad when they brought us back to recovery. One of the hardest parts of his last round of tubes and his sedated ABR was waiting for him to wake up. While it didn't take hours for him to wake up, it did take longer than we were told so our anticipation built as each minute ticked by. We were so grateful for our feisty boy being awake and fussing, despite dirty looks from other parents who were apparently not ok with Johnny's intermittent crying. 

We were released quickly and Johnny are a huge meal of macaroni and cheese and dinosaur shaped chicken nuggets before having milk and taking a nice, long nap. He has shown no ill effects of the procedure and we are grateful for that. 

Oh no! Not again!

We have gotten Johnny new jammies when he has to be sedated. These are glow in the dark dinosaur jammies. The pants are like grown up Jammie pants and make him look like a big boy!

They gave Johnny's puppy an id bracelet too!

Monday, June 2, 2014

King Sized Memories

When my grandmother passed away a year ago, she left me a little bit of money. It's interesting to be left money by someone in their will, it's the second time it has happened for us as adults and we have felt an incredible sense of obligation both times. The first time could not have been more perfectly orchestrated to help us with Matt's school and setting us up for me to stay at home for the time being. This time, we wanted to honor her with something lasting and that we could feel a sense of gratitude to her for. We had been wanting a king size bed for sometime and this was the perfect item to fill that want for my grandmother's money. We mulled over it for sometime before deciding on the set we wanted, satisfied in the balance between purchasing something "fun"and something  "responsible". 

I think the more important aspect of this purchase and the hope we have that it properly honors my grandmother's memory is much more simple. It involves bottles for Johnny in the morning and extra snuggles on nights when he doesn't feel so great. 

It involves Keegan waking up as early as she can and sneaking downstairs to join us, pressed as close to us as possible. It involves Mac jumping in with us at full force in the morning, demanding breakfast and entertainment (and our insistence that she rest with us for "just a few more minutes"). It involves lazy Sunday afternoons and Daddy sharing the comics with the girls, painstakingly explaining each one and why they are funny. 

It felt nice to be remembered by my grandmother who I cared for very much, but it feels even nicer that we are using her last gift to us to build memories with our family and to spend time together.