Thankful Thursday- Family

Matthew’s baptism was this past weekend. It served as a wonderful reminder of how lucky we are to have the family that we do.

Darren and I are both very blessed to have wonderful immediate families. We are also unbelievably blessed to have an amazing extended family…people we would love to be around even if we weren’t related!

We were so excited to spend time with many of our favorite people as we celebrated Matthew. Thank you to Carol, Gary, Karen, Tom, Deron, Jacob and Kyle for traveling from Chicago to celebrate with us. We missed those that couldn't make it. We are very thankful for our terrific family!

Pictured: Matthew's Great Aunt Marilyn, Grandma Joy, Granny Kendall, Big Brother Jackson, Daddy Darren, Big Sister Alyssa, Mommy Katie, Matthew, Great Aunt (Grammy) Karen, Cousin Kyle, Cousin Jacob, Great Uncle (Papa) Tom, Great Aunt Carol (aka GodMommy), and Great Uncle Gary (aka GodFather) across the front. Uncle Deron, Granddad Kendall, Uncle Bryan in the back.

Happy Month 2!

Happy 2 months!

Looking back, time does seem to go by so quickly. When you are in the midst of it though, the newborn period seems like dog years (1 day seems like 1 week). Today we celebrate 2 months of knowing our sweet baby Matthew. He likes to sleep, loves to be held, cries a little, eats when we make him, and smiles just as he’s drifting into sleep. The 4 of us (Alyssa, Jackson, Darren, and I) fall in love with him more and more every day.

We finally downloaded the pictures from the last 2 months and they can be found here.

The update on Matthew’s latest doctors’ appointments:

-Today we had our 2 month visit with our pediatrician. As I expected due to his unusual fussiness yesterday, Matthew has an ear infection that we’ll treat with antibiotics. This is not a big surprise given that he’s been congested for over a month. We’ve got a follow up appointment with an ENT to see if there is anything behind the persistent congestion. Hopefully he can help!

Matthew is growing, but our pediatrician is a bit concerned because he’s falling down the growth curve (not gaining as quickly as they would like). This happened to both Alyssa and Jackson as well. So, we aren’t sure whether the slide down the curve is (a) a normal Hoy baby (b) a bi-product of the congestion (c) ‘typical’ for his uniqueness or (d) concerning and a possible bi-product of his feeding problems. If it is A, and he’s like Alyssa and Jackson, he’ll stay on the curve, but hang out at the bottom 1-10th percentile. If it is B, hopefully we can get the congestion addressed at the ENT and he’ll pick back up. For C, I’m following up with the genetic counselor to see if we might need to track him on his own curve. If it is D, we’ll have to address it most likely by assisted feeding (ie tube feeding). We are praying it is not D!

The geneticist recommended we follow the typical immunization schedule, as did our pediatrician. I struggled with it, knowing how important immunizations are but also being concerned that there is so much unknown about Matthew’s uniquenesses. At this appointment, Matthew got his first round of immunizations.

-Last week we visited w/the urologist and nothing new there. We have a follow up with him in 6 months.

-We continue to see an Occupational Therapist on Mondays and practice his exercises ever day.

-Our next big follow up appointment is another diagnostic ABR (hearing test) in mid-May. We pray that his hearing either improved or remained stable compared to the previous test.

Thank you for keeping Matthew and our family in your thoughts and prayers. We know they’ve made a difference!

Never Enough

Having a unique child is like having your first child all over again, on steroids. Constantly going through my mind: “I need to read more about child development. I need to do more exercises with him. I need to play Mozart for him. I need to talk to him more. I need to learn infant massage. I need to do more! What if this one thing is the one thing that will help him meet that milestone? Get those synapses to fire?”

Alyssa and Jackson were (and are) always good at reminding us that we are not in total control but I’m still coming to terms with it with Matthew. Even if I do everything I can, Matthew still might not meet his milestones. And like Alyssa and Jackson, he might hit them if I did none of the above. It’s hard to accept having so little control over something that seems so important. Just thinking about it is a bit overwhelming.

When I have these overwhelming moments, I'm reminded that God made Matthew just as he should be-- the perfect child of God, the perfect 3rd child for us. We love Matthew as he is and pray that we can help him reach his fullest potential…whatever that may be. Until then, I need to be reminded to let it go and enjoy the moment we are in today.

Good Change

Change is hard and life is full of change. We’ve recently experienced a voluntary change for which we are very grateful!

Two weeks before Matthew was born, we changed Alyssa and Jackson’s daycare. We had been debating about the change for over 6 months. We had been with the original daycare for 3 + years and were happy the majority of the time. Unfortunately, the long time director had left last summer and no director since gave us the comfort we needed. Our initial thought was we would move all the kids together when Matthew started daycare. But sometimes enough becomes enough and we decided that although Alyssa and Jackson would be undergoing a major change with the addition of their new little brother, we would go ahead and move them to a new center before he was born. Thankfully they had a 2 week adjustment at the new center before Matthew’s arrival.

We were pleased with the move immediately. The center is warm and welcoming. The director and manager are responsive and friendly. The teachers were smart and caring. They have internet cameras so we’ve been able to check in on the kids during the day to see how they are interacting. Since the move, Jackson has made a vocabulary jump and Alyssa has been excited about her new friends. All very positive changes.

Then Matthew was born and our decision to move was discovered to be an even better decision than we originally thought. The center will welcome Matthew (when the time comes for him to go to daycare) and work with his uniquenesses. They already have some kids with atypical development in their enrollment. The infant teacher has training as an occupational therapist. We feel very comfortable that Matthew’s needs will be met at the new daycare. What a blessing!!

How is Matthew?

We are often asked: “How is Matthew doing?” Here is our answer today:

Matthew has been congested for the past 2 weeks. We aren’t all that surprised given he lives with two preschool aged petri-dishes. I took him to the pediatrician last week to check him out. I felt a little silly taking him, as it’s just congestion, but I was worried that it would be different since he’s unique. Dr. Bel let me know …it is just congestion. He’s going to get the typical childhood yuck. So, we are flushing his nose with saline mist, keeping him elevated, using the nasal aspirator, etc. Most of the time he doesn’t seem too bothered by the congestion, but sounds a bit like baby Darth Vader.

Other than that, Matthew is doing well. He’s become more proficient at eating. He takes about 2 ½ ounces in about 30 minutes, though he still leaks a bit out the side of his mouth onto a towel. This is a huge improvement in the past 6 weeks. Matthew’s sleep schedule is getting more normalized as well, for which we are very grateful. Most nights he does a 3 hour sleep stretch, eats and then does a 4 hour stretch. Overall, he’s not too fussy, and is best comforted by just being held. Thankfully, we do love holding our squishy baby!

Speaking of squishy, Matthew still has hypotonia (low muscle tone), which is typical for 4Q duplication. That makes him a bit squishier than other 6 week olds. His neurological system needs to continue to mature for the tone to improve. We have exercises recommended by OT to give him the opportunities to practice.

On the whole, Matthew is doing well right now. Although unique in his own right, he’s a pretty typical 6 week old.

We pray that Matthew meets his upcoming developmental milestones (either on time or even a bit delayed). We are not as concerned about the delays, as he was delayed in learning how to feed, but he is catching up. Completely missing milestones is our concern. Unfortunately we won’t know whether the milestone is delayed or missed until he hits it. I think we have come to terms with potential delays, I don’t think we are quite there yet if they are complete misses. But as we are trying to prepare ourselves for all the possibilities, I read a wonderful reminder on a blog of a family who have a little girl w/Angelman Syndrome. This is a small excerpt of the poem “The Child That Cannot Talk” from their blog (http://thelaughlinfamily-tx.blogspot.com/2010/01/child-who-can-not-talk.html)

I am the special child.

I am your teacher.

If you allow me, I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the special child.

So true!