Matthew Gonzalez's Journal
Written Apr 12, 2013 1:05am
Matthew is TWO! And, we are feeling the full force of the “Terrible Two’s” – and it is pretty entertaining, to say the least. It may not be the best method to deal with our dramatic little toddler, but we cannot help but laugh (most of the time) at all of Matthew’s antics and stubbornness. He loves (LOVES!) Elmo, animals and snacks of all kinds - especially donuts. And he can barely go a minute without tormenting his big brothers, by tearing up their train tracks, stealing their Legos, hitting them with Star Wars light sabers, singing Elmo songs at the top of his lungs – just being a perfect little two-year-old.
On the health front, we’ve had a month of miracles. I promise we do not use that “miracle” word lightly. Matthew has had four follow-up doctors’ appointments around his second birthday, and every single one of the doctors and therapists have deemed him a real, live miracle. Just two short years ago, we were told he had a 40% chance of survival and, if he were to survive, a 95% chance of disability. We had one nurse tell us that it wasn’t a question of whether Matthew would be disabled, but rather what kind and how many disabilities he would have. That was tough to hear, but we’ve always believed in our little, very special boy – and we knew that the horrible statistics did not control his outcome.
Here is a quick overview of our recent accomplishments:
Eyes: In the hospital, Matthew was diagnosed with severe ROP, a preemie retina disease that can cause blindness. We decided to fight for a newer, experimental treatment – Avastin – instead of traditional eye surgery, which partially destroys sight to try to save center-line vision. So far, so good! Matthew’s pediatric ophthalmologist told us that he has 20/20 vision, with no sign of ROP or prematurity. Truly, truly a miracle!
Therapy: Since we came home from the hospital, Matthew has received weekly or biweekly therapy sessions. For the past year, we have been working on his walking and gross motor skills, which were delayed. But now that he is catching up with other toddlers – and running through our house! – the early intervention specialists concluded that the therapy sessions were no longer needed. Can you believe it?!? We had planned on the therapists helping us to transition to the school district’s special ed program when Matthew turned three – but here we are before that transition can even occur, pretty much dismissed from the program! On our request, they are going to provide speech assessments for the next six months, but if all goes as planned, we will stop early intervention services at that point.
Developmental pediatrician: On a related note, we saw our developmental pediatrician this week, and Matthew was officially dismissed from her program as well. Again – can you believe it?!? He tested within normal limits (for a two-year-old!) for cognitive ability, speech language and fine motor skills. He even showed them his fantastic artistic abilities by refusing to color on paper and coloring all over their therapy tables. That’s our boy! He wasn’t quite up to two-year-old levels with gross motor skills – but given that I am his very klutzy mother, that’s probably to be expected. Anyway, he’s definitely catching up, so we can’t ask for much more.
Given all these accomplishments and a definite movement into normalcy (whatever that is), Matthew has been cleared to start “regular” preschool next fall. Cue the tears – from me, not him. I signed him up for a one-day-a-week program at Luke’s preschool (and where Andrew previously attended as well), and I cried as I turned in his registration form. I expect to be a weeping, anxious mess next fall. I really don’t know if I’ll be able to handle turning him loose in a preschool environment, given all we’ve been through. . . but I am so thankful we are going to be able to take that step. We are so, so blessed.
I have uploaded some pictures of Matthew’s birthday, which appropriately fell on Easter this year. What a day for celebrations! He wanted a cake make out of his favorite food – donuts. :) Happy birthday, Matthew!!
Written Nov 22, 2012 10:00pmHappy Thanksgiving! We spent the morning at the NICU Thanksgiving meal for the second year in a row. And this year, Matthew was able to join us. He was a little suspicious at first, but had lots of smiles for all the nurses and doctors, so he must realize how special they all are to us. Also this year, our NICU Foundation was able to play an even greater role in the event. Plus, about 20 families of former NICU babies helped to prepare and serve the meal to about 50 current NICU families. Although the holidays can be a very lonely and difficult time in the hospital, our NICU was full of smiles, hugs and gratefulness this morning! It was so special!Now onto Matthew. . . Again, this year we have SO much for which to be thankful. At his last developmental pediatrician appointment, we were told he is cognitively "normal" for his actual age (which was 16 months at the time), and had normal motor skills for his adjusted age (12 months at the time). Now, at 19 months old, he is WALKING, so he is definitely catching up on motor skills! He is pretty stubborn about his walking - and he still tries to crawl a lot. But at least we know he CAN walk, which is just amazing. A year and a half ago, we were told Matthew may not live, and if he did live, he may not walk, talk, see, hear, eat, etc. So to see him walking across the room, yelling our names and keeping up with his brothers - the boy just makes me constantly giddy. We are crossing our fingers that we are as successful in getting through this coming RSV/flu season as we were through last season, but otherwise - we have no causes for concern. He's definitely my miracle.Matthew also is settling into his new role as "big brother." I've added a picture of him and Grace, where he's clearly explaining something very important to her. When he is not ignoring her, he likes to hold her hands (like a good big brother) or poke her in the face (like a rotten big brother). So, we are having a lot of fun, we're trying to get a little sleep, and we're just very, very thankful.Happy Thanksgiving, everyone!
Written Jul 17, 2012 9:13pm
Who's that toddler? :)
For this long-overdue update, I have good news, great news - and a surprise!
First, the good news. Matthew had his 15-month well-child pediatrician appointment last week. At a hefty 18.1 pounds, he is officially on the growth charts for a 15-month-old child! Granted, he's only in the 2nd percentile, but I will take it! As my fellow preemie moms will understand, it is a HUGE accomplishment to get on the growth charts for a child's actual age, and not just his adjusted age. We were told that Matthew may start to "catch up" and get onto the growth charts around his second birthday, so we're just elated to be ahead of the game. At 28 inches tall, Matthew is not quite on the height chart yet, but he's headed in that direction. In any case, he's gained about 17 pounds and 17 inches since he was born. Our little (big!) superstar.
For the great news, according to our pediatrician, we currently are in the clear for a cerebral palsy diagnosis. Matthew has been crawling for a few months, and he is pulling himself up on EVERYTHING, and cruising along furniture and walls. I swear he is getting so, so close to walking! A year ago, we were told he may never walk, so to see him walk along the couch as he tries to chase his brothers - at only 15 months old - is amazing. Simply amazing. I can't get enough of it! I do say "currently" in the clear, though, because we never know what the future may bring. For example, as our doctor said, if Matthew has a little trouble when he learns to run, it may signal some mild CP, or it may just be how Matthew is made. But for now, I really cannot imagine a better present, considering our past.
Generally, Matthew is doing great. We've received lots of reminders lately of how very lucky we are. One of our favorite NICU nurses, who has been a nurse for years, recently told us that she hopes she sees another 24-weeker with as good an outcome as Matthew at some point in her career, but she does not think it will happen. And Matthew's therapist constantly reminds us how great he is doing. Matthew's original due date was July 21, so he recently completed his one-year milestone evaluation, and passed with flying colors - and was even advanced (yay!!!) in some areas. This is not to say our post-NICU life is without challenges. We are watching his verbal development closely; he says his family members' names right now, but not much else. Also, as is common in babies who were on ventilators and feeding tubes for extended periods, Matthew has an extremely sensitive gag reflex. If the smallest piece of food hits the back of his mouth in an odd way, watch out! But, in the grand scheme of things, not a huge deal. He still LOVES to eat, and we are addressing the issue with eating therapy. We are so proud of him!
Finally, the surprise. Surprise! Matthew - surprise! - is going to be a big brother! Surprise! I think some of you know this news already, but for those who do not, I hope you're catching how big of surprise this is to us!! :) After Matthew was born, I thought we could/would have no more children, and frankly, there was no way I could handle another NICU experience. But. as Matthew's life has taught us again and again, we are not in control here. Someone is watching out for us in such a wonderful way. So, in September, at the ripe old age of 18 months, Matthew will become a big brother. And, it's a GIRL!!! And, most importantly, I already am 32 weeks along - eight weeks past where Matthew was born. All indications point to a healthy baby and healthy pregnancy, with none of the problems that caused Matthew's early birth. (Speaking of reminding us how lucky we are, we were told by a nurse practioner yesterday, after she reviewed my file from Matthew's birth, that it is incredible that we have a live baby after his birth experience, and it is inexplicable (medical speak for "miracle") that he is completely healthy. We are so blessed!). So, surprise! One thing is for certain, though, with three older brothers only six years, three years and one year older than her, this girl is going to have A LOT of protectors - meaning she will not date until she is 30. :)
Happy summer, everyone!
Love, the Gonzalez Family