Well this last weekend was the big trip to Omaha for the Campomelic (re)union and it was, in a word, AWESOME! But, I will get the trip to Iowa City out of the way first.
Last Wednesday was Braden’s appointment with orthopedics to do his 6 month follow-up. They did x-rays before we went in on his hips and then we had our consult. His left hip “looks” like it may be dislocated but they still can’t say for sure. They keep saying the x-ray is inconclusive and that only an MRI will tell for sure if it is in the socket or not. They are unable to tell by physical manipulation as well but are encouraged by how strong his legs are because he fights them every step of the way. He isn’t upset at all by the manipulation but does NOT like to be manhandled or restrained in anyway so he resists them when they mess with him. The plan is to continue to monitor and go from there. We asked about future surgeries and they said our next step would be heel chord lengthening to get his heel off the back of his leg and make it so his feet could flatten on the ground and see how he does with that. They also thought they may not have to straighten his legs but, again, its all a wait and see. They are waiting for his appointment in August with neurosurgery to hear about the plans with his C-spine before any major leg surgeries are discussed. They want to try and manipulate his muscles without messing with bone as there is quite a bit of upkeep once you start doing surgeries on the bone. Again…we wait. They did do a baseline scoliosis x-ray as well and didn’t seem too concerned with that at the time. He thought his spine looked good given the curvature he has now. So….more waiting. His next appointment is June 18th for the pre-op check-up, Neurosurgery on August 3rd, and cleft repair, ear tube placement, and tongue clipping on August 12th (gulp).
After the appointment we met Uncle Caleb at Hardees in Coralville for lunch and Braden got his first experience eating inside a restaurant. Surprisingly we didn’t get too many stares and quite a few compliments on his cuteness. He even chattered at Uncle Caleb and showed off his sweet new skills!
Now that we got the medical mumbo jumbo out of the way we can move on to the fun stuff! Friday was the big trip to Omaha! We were pretty nervous about B in the car that long but, true to form, he continues to amaze us. He did awesome. Granted we had to pack blankies for the other boys because we kept the van at a cool 61 degrees so he didn’t sweat to death in his car seat. We took a minor detour around North Omaha due to the flooding and stopped and ate at McD’s. Our first trip out to eat (fancy I know) as a family of 5. We got our picture taken outside to document the momentous occasion. That and I thought it was interesting to see the McD’s completely encased in sandbags to protect it from the flood.
Then we were off to visit the Crawfords! Nicole used to babysit Evan and even came over in the middle of the night when my water broke with the boys when she was 8.5 months pregnant (still owe her big time for that!) We haven’t seen them since they moved to follow Coach McDermott to Creighton but GOOD NEWS! Erik is now the assistant coach at UNI so whenever we are back in the ‘Loo we can catch up with them in Cedar Falls. The kids had a great time playing in the sprinkler/water table. Mya is a year older than Evan and Trey is 1.5 months younger than the boys. I think Trey might work in a medical field when he gets older…he was very interested in Braden and all his equipment :) It was pretty cool watching them interact together. It was like they were never apart! Its also funny to see Trey and Jacob together…they could be brothers!
Here is a pic of Jacob and Trey right after Trey’s birth compared to now. (PS…Jacob was 2 months old here and Trey was a week old…he was a big boy :) )
Isn’t Miss Mya gorgeous? Her and Evan didn’t miss a beat! And where did Trey get that blonde hair??? SO cute!
After hanging with Nicole and the kids we headed over to the Martins to meet the other Campomelic families. Lexi is 14 and has Campomelic Dysplasia (CD). This is what Braden is diagnosed with. They came up with the great idea to have a get together for any CD families so we could all meet and lend support. We had been talking to everyone through the Yahoo CD support group but had never met anyone in person so we were extremely looking forward to this trip. There were 5 families, including ours, that hung out this weekend. Lainey, age 4, trached and vent dependent (from Minneapolis, MN), Lexi, age 14, who used to be trached and was on bi-pap and has neither now (from Omaha, NE), Emma, age 15, who was never trached but had similar leg bone deformities as Braden does (from Lima, Ohio), and Grace, age 2 who is trached and vent dependent although mostly just at night (from Omaha, NE) and then there was Braden.
It was so awesome to be able to talk to other families who have been in similar situations as us. FINALLY!!! Someone who understands everything we are doing/going through and will be doing. Such a nice breath of fresh air. It was also great to see everyone jumping in when tubes/HMEs, speaking valves fell off. It was kind of funny. Lainey’s passy muir (speaking valve) fell off and she signed for her mom to help her and I kind of just jumped in there subconsciously and put it back on for her and Heather, Lainey’s mom, said “Oh…its kind of nice for someone to not be scared to help out. Most people just say ‘uh…something fell off” So that was kind of cool to see! The kids had a great time playing together and the adults just sat around, asking each other questions, talking about each of our horrifying experiences with doctors and our kids prognosis, comparing equipment, and enjoyed each other’s kids. Lainey had us all doubled over…that girl is seriously the funniest little 4 yr old I have ever met! She had Braden setting off all his alarms and doing the full belly laugh. She was pure entertainment! Lainey’s dad Chris and Adam of course spent most of the weekend comparing their home modifications and electronics for the kids…boys and their toys! I could seriously go on for hours talking about our trip because it was such an amazing experience but I will just sum it up with pictures :)
Lainey and Braden meeting for the first time
On Saturday we all went as a group to the Omaha zoo. It was an interesting first 30 minutes as Braden threw a MASSIVE fit because of the heat. CD kiddos tend to be extremely hot and overheat easily do to them working so hard to breathe so we opted to stay indoors and do the indoor zoo sights as much as possible. Braden LOVED the aquarium so him and daddy spent a lot of time in there while I took Jacob and Evan to see the lions and tiger exhibit. Grace and her family met us at the zoo and we were finally able to meet Miss Grace! They had to take off a little early because it was Grace’s nap time so when they left Braden signed “More” for Grace…I think he is smitten!
At the gorilla exhibit
Braden meeting Grace for the first time…they even having matching kid karts :)
Afterwards we all went back to the Martin’s house where they again had a ton of food for us(THANKS AGAIN!!!!) and we mingled and hung out all night.
I caught these two lovebirds holding hands :) OK so actually I didn’t notice it till I uploaded the pictures Sunday night but it is too cute NOT to share! Albeit the picture is kind of blurry.
I LOVE this picture because it allows me to see the light at the end of the tunnel. Grace takes all of her food BY MOUTH and only uses her G-tube for liquid and medications. Lainey can eat by mouth as well. Liz, Grace’s mom, says she can’t keep enough food in the house for Grace so I am HOPING Braden can get there too. Liz and Angie, Lexi’s mom, gave me some great ideas to try with Braden to help him get over his oral aversion.
This picture, by the way, is Grace stealing a hotdog from Jacob AFTER she ate a huge thing of mac-n-cheese herself ;) You go girl!
On Sunday, before we headed to the Martin’s house for brunch, we decided to take the boys swimming. They had a zero depth pool at the hotel AND an indoor playground so we couldn’t leave without trying it out. This was the first time for Braden to go swimming and one thing we were told he could never do. Take that nay-saying trache care book! Of course, true to form, we couldn’t end our vacation on a good note. Jacob went down the twisty slide 4 times with no problems only to fly off it the 5th time and stop himself with his face! He is now the proud owner of a huge goose egg with a serious case of road rash on it. Poor buddy!
Here are some pics from Sunday’s last get together. There were tubes and vents strewn about the floor and the sound of vents/alarms in stereo ;)
Thanks again to the Martin' family for hosting us and providing us a place to hang out and enjoy each other’s company. Words can’t describe what an amazing experience it was for us to share our stories and our kids with all of you and we can’t wait to meet up again! Its great to know we aren’t alone in this amazing journey Braden has and will be taking us on so thank you!