Dark Cloud Departs

Before Alyssa was born, we were warned that newborns aren’t anything like the Gerber baby and a dark cloud would descend on our house with the introduction of said newborn and would dissipate at about 6 weeks. This warning was shockingly accurate with both Alyssa and Jackson. The first 6 weeks, we felt like we were in a haze, sleep deprived, struggling for balance, routine and ‘normalcy’. Life got a little easier after that first 6 weeks.

Although much about Matthew’s first six weeks has been different from our other experiences, I am glad to report the dark cloud is dissipating right on schedule. I’m not sure we recognized that it had formed over us, but we can see the difference now that the cloud is breaking up. Thank goodness!

To celebrate the cloud departing, we went to the Houston Children’s Festival today. Fun was had by all! Matthew slept through the majority of the event while I carried him in the Moby wrap. Alyssa and Jackson enjoyed meeting Ronald McDonald, Super Why, The Veggie Tales, and HEB Buddy as well as seeing the acrobats and jugglers, riding a few carnival rides, and eating some oh-so-good-but-bad-for-you fair food.

Today was a great day and we are thankful for it!

Thankful Thursday

As you’ve probably garnered from our previous posts, our outlook on life has changed since Matthew’s birth. We are more grateful for the everyday, and are now more consciously thankful for what we have. We have so much! We cannot ever convey the amount of thanks we feel for the prayers, positive thoughts, notes of encouragement, the gifts, the food, the offers of help, the ears we’ve bent, the shoulders we’ve cried on, the company, the information we’ve received, the lessons we’ve learned, the love we’ve felt, and much more. A million thank yous!!

We thank God everyday for…

Matthew
Alyssa and Jackson
Joy, Larry, Bryan, Karen, Will
My Mom and Dad
All of our extended family
Our friends near and far—From high school, college, book club, the neighborhood, etc.
Our parish family at St Edith Stein
Our HP and Accenture friends and colleagues
Matthew’s Medical Team
The friends and family of our friends and family
The teachers and directors at Alyssa and Jackson’s school
The Ronald McDonald House
The parents and siblings of unique kids as well as the unique kids
The “Love for the Hoy House” facebook group
The known and unknown followers of our blog
The gift of today

Thank you!!

Blissfully Naive

We are so grateful for the care we received at Texas Children’s, and the knowledge we gained, but it is a tough place to be. We were reminded of that this past Thursday. Darren and I (along w/Matthew) went to give our blood samples for genetic testing to see if we might be carriers of a ‘rearranged’ 4Q chromosome that led to Matthew’s duplication. Results won’t be back several weeks.

While we were waiting for our turn with the vampires, we sat in the same food court that we spent time in while we were there for Matthew’s 8 days. It was a hard reminder of the time we spent there, but it was also a glimpse into our uncertain future. In that food court, there are many unique kids…some that look different, some that act different, some with special needs. We looked around and thought “Will Matthew look like that? Will he act like that? Will he have those needs?” It is hard not to know, to wonder what the future holds, a future we are unfamiliar with.

Though in my mind, logically, we knew no more about what the future held for Alyssa and Jackson at 5 weeks than we do for Matthew. In the last few weeks, outside of TCH, we haven’t much thought about that future. We’ve just been in the here and now, enjoying Matthew in the stage that he is in.

This experience at TCH this past Thursday reminded me of crying on the way home from discovering that Matthew didn’t have thumbs. I was scared for what we didn’t yet know or uncover, but I also cried because I was scared for his potential future with the uniqueness we did know. Growing up ‘different’ is HARD. I worried that Matthew will be picked on, that he’ll fall into the wrong crowd, that he’ll suffer because he doesn’t fit in. I fretted for potentials that were years, many, many years, off.

When I spoke these words out loud, my best friend giggled at my naiveté . “Kate- that could happen to Alyssa and Jackson” Light bulb moment: Whoa…she is right! Typically developing kids are picked on, fall into the wrong crowd, suffer because they don’t fit in. I just never imagined that far in the future with Alyssa or Jackson. I was blissfully naïve, not looking much beyond the stage that we are in currently (newborn, infant, toddler, terrible twos, defiant threes, bossy fours).

As one of my friends pointed out, we’ve been in the ‘honeymoon period of kids’. It’s the period of time when the kids are still young enough to (somewhat) control, they think parents hung the moon, and peer pressure is usually a good thing (i.e. learning to use the potty or eat new foods). My worries for Matthew are worries I will likely have with all 3 kids, when we get to that point. So instead of worrying about Matthew's future years from now, I should wait and cross that bridge when we get there…with Alyssa, Jackson and Matthew.

This all was just another lesson to appreciate the moment that we are in today.

One Month

Happy 1 Month to Matthew!

In the last few days, we’ve seen an improvement in Matthew’s eating time (instead of taking 45 mins to an hour, its typically taking about 30 mins) though today he’s back to his pokey style. We are hoping it’s a matter of 2 steps forward, one step back which would keep us on a positive trajectory.

The chromosome microray results came back a little different (q25-34.2) from the karotype (q21.1-31.3). We are awaiting genetics confirmation of which is correct. We like the microray results as the duplication is a bit smaller and closer to the tip of the chromosome, which usually results in less severe symptoms. But Matthew’s uniquenesses are what they are… knowing the exact duplication isn’t a necessity and won’t change Matthew.

Most of Matthew’s uniquenesses are ‘wait and see what develops or doesn’t develop’. The one most recognizable outward symptom of his duplication is a feature that will never develop…his lack of thumbs. Ironically that is the same symptom that helped to get him diagnosed and hooked in with early intervention before he was a month. Alyssa realized he didn’t have thumbs the day after his birth.

Alyssa “He only has 4 fingers”
Me “Yes, he doesn’t have thumbs”
Alyssa “On both hands?”
Me “Yes, on both hands”
Alyssa “Will he grow them?”
Me “No honey, he won’t grow them”
Alyssa “Oh, okay”

I know I learned a lesson from her youthful innocence. He doesn’t have thumbs, so what? Some have asked what we are thinking about doing about Matthew’s lack of thumbs. The two main options are to allow him to grow and adjust to life without thumbs and the other is a surgery that can move the index finger to a functioning thumb position. We are investigating both options.

Option 1- It’s amazing what the body does to compensate, as Matthew’s index fingers have already begun curving into a more thumb like position (as seen on his bone scan when he was days old). 1 out of 100,000 babies born are born without thumbs and are able to function. My best friend sent me this link the day after we found out about his thumbs. It shows the possibilities: http://www.youtube.com/watch?v=OyCaPaV5f9o&feature=youtube_gdata

Option 2- Medical technology is amazing as well! There is a surgery called pollicization that moves the index finger into a thumb like position, allowing the user more typical pincher abilities. This is considered a ‘common surgery’ with good results, some studies say that the pollicized thumb may have up to 75% functionality of a typical thumb. This was the first link we found after we found out about his missing thumbs: http://www.childrenshospital.org/az/Site1105/mainpageS1105P0.html and this handout has a picture of the hand post procedure http://www.brownhandcenter.com/patients/other-hand-problems/documents/22.pdf.

We will meet w/the hand surgeon in a few months to discuss the pros and cons, but these are the basic options. More to come when we find out more.

Besides the appointments and a few special considerations, Matthew is the typical one month old and we all are adjusting to life as the family with 3 kids 4 years old and under. We are continuing in our routine, enjoying the everyday and are thankful for it.

In the last month, we have moved from shock to acceptance and beyond. In those first few days, I looked at Matthew and saw his outward uniquenesses (like his lack of thumbs). I wondered how long it would take for me to not notice them, to just see him. I can say…sometime between then and now . I don’t know when it happened, but it has. He’s just Matthew. The cute, squishy, baby boy.

I’m still awed at how far we’ve come in this month. We know the prayers and positive thoughts have worked…we have found a network, felt loved and supported, become more knowledgeable, changed our outlook on life, etc. God is good! Thank you!!