— begin Charley summary 🙂 —
Today Charley turns three! We’ve had a great day; Charley slept in a bit after waking up early from allergies messing with his nose. We visited one of the local “paint your own pottery” places here in Tampa, and Charley splashed paint over all of us while putting multi-colored handprints on a piece of pottery.
A visit to Cracker Barrel for lunch, where he picked up some toys (and a lot of dumplin sauce on his face), and now Charley’s taking his Birthday Nap.
Three is fun with Charley, although different. He still gets therapy at home 5 times a week (physical, speech, and occupational). He still doesn’t walk on his own (nor even stand) but he pulls to a stand and cruises on anything he can find. He has a metallic green walker which he careens all over the house (and the neighborhood!) in, terrorizing the dogs and our feet. He’s very ready to walk, but because of the tightness in his muscles it is difficult for him. Even so, we feel like it’ll happen soon. He wears leg braces 14-18 hours a day to help with his muscle tone.
Eating is still something Charley doesn’t really do – a 3 year old who doesn’t know much about ice cream. He’s still fed through his G-tube (in his belly), with a pump, which gets some stares if we take him out, but is normal for us by now. He likes to get tastes of food, which we encourage – although we’re talking very small amounts. As in, today he had 1/4 of a french fry which made him throw up a bit. Food is a long road with Charley, but Robyn works on it every day, along with his at-home nurse, and his speech therapist.
Speech – which doesn’t actually have anything to do with talking, but instead anything mouth related. A lot of Charley’s eating problem is a severe gag reflex he has (the medical term is dysphagia). The speech therapist helps Charley exercise and use his mouth, play with and smell foods, and continual stretches for all his mouth muscles. Oddly enough, not eating also gives him those cute chubby cheeks – most kids lose those when they start using their mouth to eat, exercising jaw muscles.
Charley talks, but only a few words – mama, dada, baby, jack, yah, and bye bye. He waves hello, and is learning new sounds a lot more lately – experimenting with his mouth, that sort of thing. Developmentally, we’re told he’s around 18 months. Doctors do say he will need much more work than a normal kid (hey, that is normal for us!), but they maintain he should be caught up with only very minor issues (probably no marathons for this kid) as he gets older.
Charley’s starting SCHOOL on Tuesday! It’s a big change mentally for us – he’s a bit behind developmentally, which can make it difficult for him to hang with kids his age. The school near our house has an awesome program for kids who need a little more help, and we had a meeting with TEN people there who are really investing in helping him out. He’ll be with a nice small class, around a dozen kids. Some completely “on-track,” some who need some extra work… all great kids. He’ll be there 5 days a week, full days! This helps to prepare him for kindergarten – and they really seem like a great team.
— end Charley summary 🙂 —
Today is a strange day. It’s also Price’s birthday – Charley’s twin brother. Although they both had an incredible amount of issues to work through when born (Charley spent over a year hooked up to an oxygen machine, the first 7 months of which were in a hospital without really ever leaving his incubator/tiny hospital bed), Price died only a week after today, in 2010. Of course we can’t help thinking about Ezra’s third birthday, a couple years ago. That was only 9 months after we lost him. Other young parents ask about Charley as we’re out “How cute! How old is he?” and when we respond with his age, the answer is almost always “oh…” with a questioning look. It’s a good birthday, but it brings a load of reflection and memory with it.
So many of our friends all over the country are having really tough moments lately. It hurts to see people we love in pain, and it hurts to constantly be learning how much a part of life pain is. It makes small moments more beautiful.
Overall we’ve been good. Charley is becoming more and more a little boy, Because of Ezra is going well, and Robyn and I are feeling strong and in love. It’s spring in Tampa, which means weather in the 70s, sunshine, and light breezes. Perfect walking around weather. Or strolling, in Charley’s case. There’s a feeling of “waiting;” a pause, like some change is coming… but I think we’re great. We’re going to be great.
OMG! You guys, he’s a doll!. So glad to hear you are doing so well. Happy Birthday Charlie!!!!
Oh my, he is an immensely handsome little guy! Thank you for the update on Charley. I can only imagine how bittersweet days like today are. I think of sweet Ezra and your family often. God bless you all! Thank you for sharing your joy and your pain with us all.
Hi Robyn and Kyle. I am so delighted to see Charley’s progress. What a face. Absolutely adorable. Can only imagine what each and every milestone must bring to you both- the great and the sorrowful. You are both such remarkable young people. You have done so much to bring neuroblastoma to the forefront. It amazes me to read about how rare it is when I have known 2 personally. Price will live with and through Charley and he will bring you both the joy you so deserve. Melissa
WOWWWWW!!!!! I am speechless! You two are incredible!! We all miss you!! God bless!!
Wow! I can’t believe Charlie’s 3 already!!! He’s so BIG!!! And of course so beautiful! HaPpY BiRtHday to him!!
And I know that you also think of Price. I, too, am a twin. I suppose we’re almost only halves.. we t(w)ogether somehow make one. One always spurs thoughts of the other.
And though I never met Ezra, I feel like I have. Through your posts, through his story, he was precious… even from afar, I can’t help but to have loved him. I also miss him… especially for you two.
Blessings to your whole family! May God do great things through you. And may your sweet Charlie be walking soon! I, too, feel great things happening around your corner!
Happy birthday to Charley! So wonderful to see pictures of him. How far he has come from those days in the NICU. God bless you all as you continue to work through the pain of loss and the joy of hope. Thank you for sharing!
He is adorable! I love his hair! Just love it! Thanks for the update and keeping us all in the loop. You have one happy boy there! Good job.
It’s great to see Charley’s progress. Continuing to pray for your family.
I was walking back to the class I intern in, and in the hall who do I see walking with his walker and a big smile…Charley!! I had to do a double take, he’s gotten so big! That was definitely the high light of my week, it was so awesome seeing him there and seeing him getting around so well with his walker and hearing him laugh and seeing that smile! 🙂