I can now look over all that has transpired and say with confidence that I can’t imagine my life without this crazy kid!! Would I take the spina bifida away from him if I could? Of course!! BUT…..I’m also really confident that God knew what He was doing. I know that he gave Easton an incredible personality and an independence and drive that cannot be matched – this boy doesn’t understand the concept of “can’t” and I hope he NEVER DOES!!
These past few months with this youngest man of mine have been CRAZY and good and incredible all in one. I had to brag on him a little J (well, him and the Incredible God we serve that has been the author of all of this!!)
So, back in August, when the boys went to Kindergarten, Easton’s walker started his removal from the family. We had been “practicing” with crutches some around the house but Easton was not often interested in attempting them – they were harder and he definitely preferred his walker. But, it was time, he was ready and I (the pediatric physical therapist) knew it (the mommy in me…..not as sure). We were mean – it was the only way…..We started moving his walker away from him and forcing him to walk to it using his crutches. We gradually moved the walker farther and farther thus increasing the distance he was using the crutches. We hid the silly thing at times even. There were a lot of tears (mostly from him), a lot of frustration (probably 50-50 him and us), some crashing and burning, some boo boo’s and a lot of leaving REALLY early to give Easton all the time he needed to walk with these new crazy sticks.
But, just like the PT in me knew….he did great, caught on incredibly quickly and now is a crazy man!!
So this is where we started......
Crutches (which he calls Chuckas – ADORABLE) are TOUGH and usually something we don’t even try teaching kids until they are about 3. Easton was using crutches as his primary way to get around before he was 2 ½!! The reason we were pushing the chuckas was because they allow him to be MUCH more mobile. He is now able to climb on the playground without crawling, They are much less bulky so it is much easier to travel with them and just in general they are less restrictive – a better option overall and one that is great for long term!!
It was a tough few weeks while he adjusted and while mommy and daddy tried to convince him that this was indeed a better plan than the walker. I am happy to say today though, that his walker is now being borrowed by one of mommy’s patients who needs it – and honestly, I hope it stays there :)
He is also experimenting more and more with taking some steps on his own. His independent standing has improved significantly. He is able to stand easily for 20-30 seconds without any help. He is also able to pretty consistently take about 3-4 steps without help. The best he’s ever done is 9 (and I have it on video) :)
Answer….I’m not sure. Maybe but, if not, that is ok too. When he first started walking with a walker I wouldn’t have been able to tell you that before his third birthday he would be a pro on crutches….At this point – I’m not putting anything past him and am just going to go along for the ride!!
So, now for doctor updates….and there are some good ones J
Easton had a repeat MRI in November. Last year when he had one done, his ventricles looked good (remember those are the fluid filled cavities in your brain – it is what we were watching really closely when he was a baby to make sure they weren’t getting too big which would mean the need for a shunt). Last year they also found something called a syrinx – a fluid filled cyst on his spinal cord. The doctor last year said they were relatively common for kids with spina bifida and wasn’t super concerned – just wanted us to have a repeat MRI in a year to make sure it wasn’t growing.
So…..back to this November – first thing, he was a rock star!! I woke him up in the middle of the night (or so it felt) and drug him down to the hospital with no breakfast and nothing to drink. That boy flirted with every nurse who walked by and was such a sweetheart the entire time!!
About a week later we got to go see our favorite neurosurgeon Dr. Beier. With a smile that she couldn’t wipe off her face she said that his ventricles look great – and his syrinx…..SIGNIFICANTLY SMALLER!! God is so so very good!! She was amazed at how well he is doing – actually her exact words were “I always knew that he was going to do well but he has far surpassed my expectations.” Praise God!! She said she didn’t need to see him again FOR AN ENTIRE YEAR and didn’t need us to do any imaging unless there was a problem! Just to remind you of where we have come from….When Easton was born, we were having head ultrasounds to check his ventricles and then appointments with the neurosurgeon EVERY 8 WEEKS! What a change!!
Next, on to orthopedics….
The last time we saw Dr. Loveless he felt like it was time to talk about doing surgery. The plan was to do tibial (lower leg) and femoral (upper leg/hip) derotational osteotomies on both legs in January – That is a surgery to help the rotation he has in his legs – which is what causes his feet to turn the wrong way when he is stepping. It is a big surgery – 5 days in the hospital, several weeks in casts above the knee….all around no fun but something that Dr. Loveless really felt would have a huge positive functional impact for Easton long term. We had a “pre-op” appointment with him 2 weeks ago…..He, like Dr. Beier, was floored with how well he is doing, but….the best part of that appointment…….
Easton’s hips look so awesome that he doesn’t want to do hip surgery right now!! That means Easton only needs surgery on his lower legs – which means only ONE night in the hospital (instead of 5). He will still have to have casts on both legs but they will be below the knee which will make things WAY easier!! YIPEE!!
Yeah, still going to need prayers on that one….it’s still a big surgery (just not AS big)…and…..Easton, my kid who doesn’t know how to sit still has to be NON-WEIGHTBEARING for 4 weeks…..
Surgery is scheduled for January 12.
So, on to the rest of the family…..
The fall has been crazy for the whole family!! The kids are adjusting well to kindergarten – they are loving their teacher and I am absolutely FLOORED at home much they are learning. They are READING!! It’s amazing!! They look forward to school….not so much to homework but they don’t fight too much!!
We enjoyed a busy fall season, just like aways…..
The big kids played soccer this fall – they were significantly better than last year….though I’m not putting many eggs in the soccer scholarship basket….they had fun and that’s all that matters – The Falcon Ninjas (yep….that’s what happens when you let a bunch of 5 year olds name the team) lost almost every game….but Daddy eventually got talked into being the assistant coach and ended up really enjoying himself :)
We did the annual trip to the corn maze with our friends the Campbells – they kids had a blast and it was a warm but beautiful day. We got to go to the air show again this year – except this year it was at the beach. We had a blast – but I’m not sure whether the kids were more excited about the planes or the sand….
Easton has done a little modeling – and has apparently stolen the heart of the owner of Sweet Petunia clothing – the company he models for. He is a total ham in front of the camera and gets paid in adorable clothes!! Works for me!!
Halloween was a hit again this year – we won best cul-de-sac ever….I’m sure our trophy just got lost in the mail! I had three members of the paw patrol at my house….and in the cul-de-sac we had a huge food spread, games, more candy than we could ever hand out and the big giant movie screen playing The Giant Pumpkin….It was so much fun!! The kids had a blast and I think we are still working on Halloween candy…..
We have enjoyed countless firepit evenings with smores, lots of bike rides, several visits to Sweet Frog (our favorite frozen yogurt place) and lots of fun memories with the cousins (you can get the play by play with pictures) :)
Now, it’s 5 days until Christmas (well, it was when I wrote this….haha – that’s real life around here) I can’t believe that my babies are half done with kindergarten!! How can that even be??!! They are pretty excited about Christmas break (and mommy is wishing I worked in the school system) :( We are hosing the Swigarts for Christmas, mommy gave herself too many craft projects all with an end date of December 24th and at this point, I haven’t wrapped a single present but it will all get done and I can sleep when I’m dead right??!!
We’ve enjoyed some fun this season too….Christmas tree decorating, Christmas lights, our Elf Elliot who has been pretty silly this year, crafts and cookies are on the to do list. I keep reminding myself that I’m going to miss the crazy one day….right??!!
On that note….off to work on one of those projects…..
We pray that each of you have a very Merry Christmas and an incredible 2016! We cannot wait to see what is in store for us!!
Thanks for continuing to keep us in your prayers as we figure out our way through this crazy life……
Love and Hugs
The Diehls
PS – now that Christmas is long gone….I promise to follow up this blog with all the crazy from Christmas this year :)