Monday, July 11, 2011

Omaha bound…

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 :) )

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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.

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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 :)

Emma and Lexi were awesome helpers with Jacob and Evan and they were immediately in love with those girls. Evan even told me I couldn’t sit by him cause Lexi was sitting with him! IMG_1813  IMG_1827

Lainey and Braden meeting for the first time

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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!

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At the gorilla exhibit

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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.

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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!

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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 ;)

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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!


Tuesday, July 5, 2011

We’ve got a walker AND a talker…whatchyou got?

So its official…Jacob is on the move. Just before their 18 month (that’s right you heard correctly) appointment I was ready to discuss why Jacob still wasn’t walking when I know some 6 month olds practically running laps around Big Jake and then BAM! He decides on Adams birthday to just stand up and start walking around. Adam and I kind of looked at each other and said “Are you seeing this?” and he’s been on the move since. He thinks he’s pretty hot stuff, making sure you are watching. He even likes to spin on a dime and walk the opposite direction. He is also perfecting this BeyoncĂ© move that I like to refer to as the “Put a ring on it” dance. If you’ve ever seen her video you would know what I mean. He can do a mean butt dance! (sidebar-I think Adam may be a bit worried that Evan dances like a stripper and Jacob dances like BeyoncĂ©…oh well… I like to think of it as “talent” HA!) Jacob is also talking a lot more as well. He only has a few words because mostly he just screams, points, and smacks his brothers in a fit of tantrums while he’s awake. His favorite words are “Ball”, “Bus”, “Da-da”, and “Bay-ee” for our dog Bailey. He also yells “ba-ba” and smacks himself in his nether regions whenever I change his diaper so I can only assume that’s his word for wiener ( in me.. are pretty immature here and don’t like to use the technical term)

Braden has also made some big strides this past week and has figured out how to talk around his trache and boy is he pretty proud of it. Evan and Jacob like egging him on and its fun to watch them interact. I would post a video on here if I could ever figure out my log in for YouTube...sigh I know I should write that crap down! He also got a big boy hair cut from daddy and was NOT a fan of the clippers. He’s a hard man to keep hold of when he doesn’t want to be…we like to call him our little greased pig. He’s also tolerating up to 5 tastes of baby food per time, he lets you stick a spoon in his mouth (which if you know him he HATED in the beginning), can sit up to 30 minutes in his tumble form chair, and will blow kisses, signs “All done”, can point to his knee when singing “Head, shoulders, knees and toes”, and can do a mean “Roll it” during Patty-cake! He’s even quite the little exerciser! Sarah and I would like to patent “The Braden” pose for Pilates. ((If you would like to do “The Braden”, lie on your back, with your legs in the air at a 30 degree angle, and clap your hands and the soles of your feet at the same time…its great for working those core muscles and it’s a bit harder than you think ;) ))  Braden should have a killer 6 pack for all “The Braden’s” he does during the day!

The boys had their 18 month appointment on the 1st and here are their stats. Jacob weighs in at 23 lbs 12 oz. He’s 31.5 inches long and has a 49.5 cm noggin. Braden weighs in a little under Jacob at 23 lbs 2 oz, and is 25.5 inches long with a 50 cm size melon. Both boys are pretty comparable in size minus the length. I really wish they would chart Braden on the Achondroplasia chart but they have yet to do that. So with that being said, both boys are at 25% in weight, 99% in head size and Jacob is at 50% in height (WOOHOOO!!!!!) and poor B is so far below the growth curve in height that he had to scroll down to see where it landed (OK so that’s an exaggeration but seriously its pretty far below the curve… he’s my pint sized peanut!)

Evan has been pretty busy these days playing outside and hanging with dad. Adam borrowed a tandem bike for Evan to ride that attaches to his bike but unfortunately his feet don’t touch the pedals. Evan has a blast riding with Adam but I’m not sure daddy has as much fun since he’s doing all the work. Adam says he gets quite a few looks on the ride since he’s working his butt off all the while Evan is chattering away like a chatty Cathy doll. He always ends the rides with “Hey dad…that SURE was a great bike ride.” HA! He had a bit of a medical scare last week (Adam said he was fine…I disagreed) He got a bug bite…well how do I put it…somewhere not too pleasant and had a case of what can best be described as “severe swelling”. I freaked out and of course took him to the doc. Evan, in his not shy way, walked right up to the front desk at McFarland Clinic and said “The doctor needs to fix my wiener!” And did I mention that he YELLED it at the receptionist and then proceeded to say “My mom says it has red on it and it needs to be white OK?” WOW…thanks Evan I’m sure everyone was just DYING to know why we were here today! Well that just proves it takes A LOT to embarrass my child…good thing to know while he grows up and it will suit him well with Adam and I as parents!

This month is chalk full of doctor’s appointments so I’m sure I will have plenty to update there and THIS weekend is our FIRST family vacation as a family of 5 and we are headed to Omaha! We are so excited for this trip! We are meeting up with 4-5 other families who have children with Braden’s condition. Adam and I talk to them frequently on Facebook and through email but it will be so awesome to FINALLY meet them in person and share stories with people who know exactly what we are going through. I’m most excited for Evan to meet other children like Braden and see how he reacts. I hope that we all survive the car ride down and that we have a great time without any medical emergencies! I hope to post LOTS of pictures about our trip and show off all our miracle kids to the world…well ok just the small community of bored people who read my blog…BUT STILL! I’m excited can you tell???

Anyway, I will leave you with some pics from our summer adventures. Until next time!

The boys love Uncle Seann…he’s multifunctional. One minute he can be a back rest, the next a jungle gym!

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One hot day I took Jacob and Evan to the wading pool at Brookside park…not bad entertainment for a buck (would have been better free…but eh? What can ya do?)

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Did I mention the boys are OBSESSED with balls? Thanks to our friend Julie, we have an ENTIRE tub (or keg cooler as Adam calls it) FULL of balls! And yes, that’s Jacob beating Braden in the face with a ball…don’t worry tho, he LOVED it!

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On Friday, Wendy and I took Jacob and Evan to the aquatic center in Ames. Oddly enough, Princess Evan didn’t cry once when he got water splashed in his face and even went down the slides…if you know Evan, this turn of events s quite shocking. Unfortunately he wasn’t too thrilled to be leaving the pool hence the pouty face!

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And not to be left out, the B-man. See how much of his mane got the axe???

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