Update on Feeding

It is almost a given that something we do 3-6 hours a day influences our mood. So, the mood in our house somewhat revolves around how well Matthew is eating. We journal Matthew’s feeds: time, amount, minutes, notes and our rating (from 1- horrible, didn’t finish to 10- fantastic, perfect feed). The mood is bleak when the daily average is below 5, more upbeat when the average is above 5.

Tuesday and Wednesday were bleak with no feedings rating above 6. Thursday and today have been …mostly great. He’s gotten a 1 (horrible feed) both yesterday and today, but all the other feeds have been 8, 9 or 10 (fantastic feeds). Some of these feeds are the best he’s ever fed! Whether it’s the Zantac, or the fact I’ve gotten off dairy, or the new bottle we’re trying…it doesn’t matter, we are just thrilled he’s eating and not freaking out!

What a fantastic way to move into the weekend. I'm looking forward to this weekend, as we’ll celebrate “Mommy’s Day”, which is the Hoy House ‘Mother’s Day Observed’, the day that the family does whatever Mommy wants with what I hope will be a smile. Hopefully that includes continued good eating for Matthew! Happy Friday to all!

GI Appointment

Lately, Matthew’s feedings have been fair at best and downright terrible at worst. Besides the problems he has with suck (and therefore leak) because of his hypotonia, Matthew has been congested for 6 weeks which has caused him to leak more. He has also had a problem with reflux which makes him freak out mid-feed and it is a struggle to get him to take the rest of the bottle. Last week the ENT put Matthew on prevacid in hopes that it would fix the reflux, fix the congestion, fix the feeding problem and fix the slowing weight gain. Unfortunately the prevacid made Matthew freak out more. The feedings after the prevacid were spent with a screaming Matthew, who after would be sweaty, tired, and not wanting to eat anything. The ‘cure’ was making it worse.

Thankfully last week we had already scheduled an appointment with the gastroenterologist for today. These were the key notes from our GI appointment:

1. Prevacid has been found to exacerbate symptoms of reflux in some infants under 1 years old. (We weren’t imagining it…it did make him worse!) Dr recommended we stop it immediately.
2. He prescribed Zantac. He thinks it should help within the next few days . We pray this helps.
3. He recommended we add a little rice cereal to Matthew’s bottles. Now we just need to find a bottle nipple that is big enough for the cereal but small enough to limit his leak. So far, 3 tries and no luck.
4. He thinks that Matthew’s fat stores are adequate and we shouldn’t be worried about his weight gain. Like us, the doctor suspects that Matthew will be on his own curve and he’s healthy at the weight he is right now. Matthew isn’t a budda baby, but he’s the chunkiest Hoy baby we’ve had. Hopefully we can convince our pediatrician to not worry about the slow weight gain.

Tonight, Matthew, Darren and I are going to a seminar put on by the genetics department on dealing with stress with a genetic disorder diagnosis. Although we feel like we are in a pretty good place right now, taking each day as it comes, it never hurts to have more tools in our tool kit for when the unexpected arises.

Happy Mothers Day

I received this note from Matthew’s Grammy Karen earlier this week and with a few tears in my eyes, I wanted to share. What a beautiful reminder of the awesome responsibility of being a mom.

A Newborn's Conversation with God

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?" God said, "Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."

God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."

Again the small child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"

God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"

God said, "Your angel will place your hands together and will teach you how to pray."

"Who will protect me?"

God said, "Your angel will defend you even if it means risking its life."

"But I will always be sad because I will not see you anymore."

God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."

God said, “You will simply call her, Mom."

Happy Mother’s Day to all!

Happy Nurses Day

Today is Thankful Thursday and Nurses Day…so today I want to give thanks to all the great nurses that cared for Matthew and for us while we were at Texas Children’s.

I don’t even know her last name, and she will probably never know how much she means to our family, but we are forever grateful for Night Nurse Nicole. She was caring and wise and she is the reason we were able to come home without a feeding tube. Although Matthew still struggles with the bottle, every time I feed him, I am so grateful she was assigned to Matthew!

A million thank yous to Night Nurse Nicole and all nurses!

Hose Up The Nose

Matthew has been having feeding issues. We have been attributing the issues to his persistent congestion and subsequent ear infection, but as the ear infection has cleared the issues have remained. At Occupational Therapy on Monday, our therapist, Yvonne, was feeding him as I updated her on the pediatrician’s concerns about his slow weight gain. She asked if we had done a GI study. Actually, that is one of the few tests we haven’t done with Matthew. Her recommendation was that we get an appointment w/a gastroenterologist to check for reflux, since Matthew acts like he might have it when he eats. She also mentioned she’s seen kids w/reflux that has caused persistent congestion and ear infections. So, before we left the building, we made an appointment w/a gastroenterologist for next Tuesday.

A few hours after OT, we had an appointment w/ENT (ear, nose, throat). The ENT looks at Matthew, whose ear infection has cleared, and states that Matthew’s congestion is not in his nose but a little further down and he has a suspicion he knows what is going on but we need to take a better look at Matthew’s voice box. After sticking the camera hose up Matthew’s nose, the ENT declares that there is some evidence of reflux and that is probably the cause of the persistent congestion. We left his office w/a prescription for baby prevacid and a follow up appointment in a month. We are all hopeful that this is the fix… fix the reflux, fix the congestion, fix that particular feeding problem, and fix the slow weight gain.

Other big news-- as we were waiting for the ENT yesterday, Matthew grinned at Darren. So, within the past 3 days, Matthew has begun using non-crying sounds and smiled! We have moved out of what one of our friends kindly calls ‘the parasite stage’. We are now interacting!! Yippee!!

Finally, more big news, our genetic testing results are in. Always in our minds was the fear that if Darren or I had a rearranged chromosome, not only was it passed on to Matthew as a duplication, but it might have been passed on to Alyssa and Jackson as a rearrangement that they might one day pass along to our grandkids either as a rearrangement or duplication. But more good news came this morning—Matthew’s chromosome duplication is de novo, meaning it was a completely random occurrence. Neither Darren nor I have any chromosome abnormalities. Matthew is completely unique…and obviously meant just for us!!

May Day

We have had a wonderful and jam-packed weekend!

Dark and early Saturday morning, all five of us piled into the car for a trip to the Houston medical center. We were glad to be going for a reason other than a doctor's appointment. The Blanton-Davis Ovarian Cancer Research Program at M. D. Anderson was hosting the 13th annual Sprint For Life. Our cousin and friend Jenn Johnson passed away last November after battling ovarian cancer, and we were blessed to walk with her parents and other friends and family members for Saturday's 5K. A lot of tears, laughs, and stories were exchanged throughout our walk, and everyone was thankful for the experience.

The group photo was before the walk. We were all a little ragged around the edges afterwards; no group photo included to help us save face. The full day of family festivities were a bit much for a few of us.

Sunday brought the Randolf kids, Katie and Graham, for an extended visit; a family emergency resulted in parents Peter and Kirsten being out of town for the weekend. Katie and Graham are each six months younger than Alyssa and Jackson respectively. A fun-filled day of a house-full of children resulted. Check back next week to see if the Hoy House is still standing, but a trip to the neighborhood park, a viewing of the Disney movie "Earth" complete with popcorn, and a sleep-over were the big things that kept the kids busy.

In between the large scheduled events of the weekend, we had several big moments. Matthew decided to wait until the family visiting from Chicago had left before making a couple of huge steps in his development. Katie and Matthew spent 20 minutes "talking" on Saturday night, and he made his first non-crying sounds! Very exciting and a huge development for Matthew and his parents. *grin* Sunday morning, Katie saw another big moment for Matthew. Quickly grabbing the camera, I captured it to share with everyone.

Matthew grabbed the butterfly on his bouncy seat on his own. On the great Matthew roller coaster this weekend has definitely been a high point. A very high point.

Meanwhile, Jackson had a breakthrough of his own. Katie had been hiding a new (and as of yet too large) pair of shoes for Jackson. This is a very special pair of shoes; Toy Story's Woody and Buzz Lightyear adorn the sides. Jackson found these and immediately coveted them. When informed that they wouldn't fit and instructed to put them back, Jackson did just that without hesitation, question, or whine! I'm still in complete shock.

Not to be outdone, Alyssa had a big moment of her own. She helped Jackson clean the playroom (without being asked/prodded by parents). It was spotless!

A huge thank you to Papa Tom, Grammy Karen, (Godfather) Uncle Gary, and (Godmother) Auntie C. Their first trip to visit us here in Houston was wonderful; we can't wait until their next trip to Texas. Sprint for Life 2011 is less than 52 weeks away!

Truly a momentous weekend was had by all. Hope you had a great one as well!