Turtle Power

It started innocently enough. Matthew and I were up early on a Saturday morning, Joe was out running errands, and I was desperately needing a break from endless episodes of Jake and the Neverland Pirates. So, I fired up YouTube in search of cartoons from the eighties that Joe and I grew up watching. 

He was not impressed with the awesomeness of The Muppet Babies, showed a fleeting interest in A Pup Named Scooby Doo, and he flat out dissed The Smurfs.  Then I remembered a gem that my younger brother John was obsessed with when he was around Matthew's age....The Teenage Mutant Ninja Turtles.

As soon as the theme song started, Matthew was enraptured. Three episodes in, I forgot how much I hated this show when I was younger and started getting into the Turtle Power. Joe came home and got hooked too. It was fun seeing Matthew so into something, when historically, he could not care less about anything we buy or show him.

The next day we went to Nonna and Nonno G's house for Sunday dinner. While we were there they remembered that some of Joe's old Ninja Turtle toys were still in the attic, so they gave them to Matthew. It was love at first hug.

It was all downhill from there. His outfits took on a new theme.

If he was going to have the big Ninja Turtles, of course he needed Donatello and Michelangelo to play with. They would help his OT skills we convinced ourselves. 

Then I found the two he was missing at Target. It was only right that he have Leonardo and Raphael to complete the whole Teenage Mutant Ninja Turtle Team. 

We even took him to see another example of Michael Bay stealing our childhood by seeing the new Teenage Mutant Ninja Turtle movie. He laughed and squealed when the turtles came on the screen.

   

   

And I may have gone a teeny bit overboard contributing to his obsession.

Best of all is seeing this gorgeous, happy smile showing us how much he loves all of it. Seeing him into something, anything, is thrilling. For a kid with no words, the smile really says it all for him.

What are your kiddos into? Any obsessions?

Long Time, No Post

It has been over 2 months since my last post here. I've missed writing and hope that you've missed checking in on our little family.

I had all kinds of posts planned and in my drafts folder-- a Mother's Day post, a Father's Day post, a post about a rare and amazing date night for me and the hubby, posts about Matthew's amazing new school and his last day of school. All of those will come eventually, we've been busy lately.

About a month ago, Matthew began gagging and retching when it came to eating and drinking. Then the vomit would come. It would happen with solid food, with bottles of Keto eggnog, and even when we would touch empty spoons to his lips. After the retching and vomiting he would be all smiles and like nothing was bothering him.

 That was the start of our latest little adventure. One month that equalled 4 trips to the ER, 2 hospital admissions, firing our long-time Gastrointerologist and hiring a new one during a hospital admission, an NG tube, a pH probe, multiple x-rays, and my little guy being stuck at least 12 times for IVs. And another crappy part for me particularly was having to see the smug staff pediatrician who told me when Matthew was 6 months old that all of this was going to happen and that he would need assistance with feeding as he got older because "all kids with his kind of issues do."


The pH probe showed severe levels of acid reflux that his Prevacid wasn't even coming close to touching. Also when filling out his probe journal, Matthew's nurse suggested that I include all of the times he would have an episode of Infantile Spasms. Turns out those episodes were occurring exactly when his acid levels were the highest. The diet is controlling his seizures, now we may have an answer about the spasms.

And now here we are, 2 weeks status post a laproscopic Nissen Fundoplication and g-tube placement. I worked so hard with Matthew to keep us from getting to this point: working with a speech therapist and an occupational therapist on feeding, trying new textures, using a Nuk brush to get him to practice biting down. I so badly wanted to prove that smug doctor wrong.

 Even though he is feeling so much better now that his acid issues are resolved, part of me still feels like I failed him because I didn't work hard enough with him to keep him from needing the g-tube. Silly I know, because I know that a child needing a g-tube isn't a failure and that moms aren't failures because their kid needs one, it's just something in my head. Us moms have the bad habit of always blaming ourselves and saying we should have done more.

We just got home from the hospital on Monday. He actually was released from the hospital last Tuesday, but we were readmitted the very next afternoon due to gastroparesis and c diff. It has been a very long two weeks being in the hospital and an even longer month seeing your baby in pain. Now we are fighting insurance and dealing with home health companies to get supplies delivered and learning how to live life with a g-tube and a feeding pump.

For all of our readers who are still here, thanks for hanging in with us. If any of you are parents of Tubie kiddos, any helpful hints or product recommendations for a rookie mom?

The Generosity of Strangers

A few weeks ago, there was a message in a special needs Facebook forum that I'm a member of where a friend was giving away a Tumbleform II chair with a wheeled base that her kids had outgrown to anyone who wanted it. I jumped on it with zero hesitation. For our family it was an answer to a prayer, more mobility for Matt outside of the wheelchair and that it wouldn't have to go through insurance to get it. Any parent with a child who has special needs knows how expensive medical equipment is and how insurance companies will go out of their way not to cover it.

Upon learning a little more about this chair, I found out that we are the third family to use it and that it has been well-loved. The first family who used it has a son with Cerebral Palsy. When he outgrew it, it was passed it to a family with 9 children, some of whom have special needs and all of them very much loved. I was blessed enough to "meet" their mom, Meredith, in a group for special needs parents and was immediately mesmerized by her family's testimony. She has a blog about her family, their faith, and homeschooling that I love, please stop by and check it out.

We made the hour drive to their home and felt instantly welcomed. I was so excited that I was finally going to meet them in person after chatting on and off for a few months. We didn't get all of the kids together during this visit because both Matt and their kiddos were all in various stages of illness and we didn't want to expose all of them to each others germs, but hopefully we can soon.

Matt loves his new chair, it is far less confining and restrictive than his wheelchair. He has especially loved sitting in it since we put up the Christmas tree because he can get closer and look at the lights.We are so thankful for their generosity and even more when those Facebook friends become friends in real life.

First Day of School-- A Big Day for a Little Guy

Today was the kiddo's first real day of school at UCP. He went to the summer program two days a  week for 3 hours a day, but this is a whole new world for us. As of today he will be going to the toddler program for 6 hours a day, four days a week, all at the tender age of 2 years old.

I have been with Matt every day of his life, never spending more than a couple hours away for any reason. With his epilepsy and other health issues, I don't just leave him with anyone either. My in-laws are the only ones who have ever cared for him other than Joe and I until now. This is a big adjustment for me, learning to let go and trust others with my precious boy. Also, because for the first time in two years, I have no idea what to do with myself when I am not caring for him.

He was so excited when he got to his classroom, he saw the other kids running around and playing with toys while their parents were waiting to speak with the teacher. I emptied his backpack and filled his cubby, then sat him in his Rifton chair and kissed him goodbye. I knew that he wouldn't be staying the full class time today because we had a standing speech and occupational therapy appointment, but it was so hard leaving him.

I get a lot of questions from other parents as to why I have him in school so young. Most tell me, "Good for you! You need a break!" That isn't why we chose this path for him. We wanted Matt to learn life skills,to get supplemental speech and occupational therapies (hopefully physical therapy too at some point), and to be with other kids who are like him.

I will miss my little monkey, but I am so excited to see the progress to come! And hopefully this will mean that I will have more time to work more here :)