"Off, off, off"

Connor in his "Leisure Suit" pjs, yes they have his name embroidered on them!


The resident cutest reindeer


Cameron your Christmas wish has been granted...the cast was removed on Friday the 19th. Considering it all Cameron made it to 12 days before he started saying "off, off" and pointing to his cast. Of course now that's it's gone he is still pointing at his leg and saying "off", so he gets it, which is good.

We made it through the snow to the city on Friday, nothing was going to stop us from getting the cast removed. Despite the fact that I'm pretty sure Cameron thought someone was going to cut his leg off with the "saw" he survived. It was truly the FIRST time I could visibly see that Cameron was scared in the hospital. Of all the trips to Drs, shots, CT Scans, MRIs etc. I have never seen him so scared as when they started up the saw. It was not fun to watch him so terrified, and it makes me sad to think about future hospital visits now that he is aware of his surroundings but it's also a good thing because he is aware of his surroundings.

Once the cast was off he was gingerly walking around, it was good to see. He's still not 100% sure of things but with his new braces he seems to be doing ok. The braces are a work in progress to say the least. We are also supposed to have him wear one of the braces and a knee imbolizer at night, we tried it last night and after an hour of screaming we gave in. So we've got to work on this with him slowly.

Last week we also had Cameron's 6 month IFSP Review. All 7 of Cameron's therapists came to the house, I think he really enjoyed having all of his "friends" in one room at the same time. He would take turns going around and hugging them. It was a long meeting and we are talking about getting a functional vision assessment for him. We know his vision is ok as we see the Opthamologist regularly, it's more about how he uses his vision. Eye contact is not his strong suit to say the least. Beyond that we talked about plans for the transition from EI to the School District when he turns 3, it's quite a process and we won't get into it now.

In Connor updates he is a cutie pie!!! He is also starting to move around which is so great to see, he is not crawling, but he is sitting up and can maneuver his way around a room, basically going backward and sideways, it's funny to watch. I can tell these two boys are going to keep us very busy, very soon.


We also fit in a visit to Santa this past weekend, it was for sure the fastest visit in history. We walked into the Riverside Rec Dept at 3:23pm (Santa was going to be there till 3:30Pm) well he and his little elf were all ready to go when we walked in but we told them they had two more customers so they reluctantly went back into the room with the folding chairs and sparse decorations at best. The Elf didn't even take off her coat, but Santa was a pretty good sport. Cameron sat for about 5 seconds, Connor about the same and I swear we were all back in the car by 3:30pm.
It was really fine with us, we just needed to say we did it I guess.


We are looking forward to a nice Christmas at home this year, so if you are in the area and want to get together or stop by give us a ring!

I can't go without thanking everyone for your continued support of our family, it's been another wild year but a very blessed one too. Give all your kiddos a hug this Christmas from us... Oh and if you can figure out what our resident 2.5 year old is doing in the photo below, you'll win a prize :)


XOXO

The Blue Cast

Cameron is a champ! He got his cast on Friday and was a superstar, he chose Blue according to Dad.
It took him a few days to get used to walking with it on, but he's doing great now.
Good news, we convinced them to take it off before Christmas, so only two weeks with the cast.
Thanks to everyone for the well wishes, we are all relieved that it was just a fracture and it's great to see him walking again (even with a cast!)

NO!

Cameron has a new word...
NO!
It was really cute when he first said it on Thanksgiving. Now, it's kind of, not so cute. But it's a new word and we'll take it.

He also can say "Bath", which is always cute.

Along the same topic of NO, that's how I feel right now. Cameron stopped walking on Tuesday, we are pretty sure it's due to a small tumble in therapy that morning, but not 100% sure. So after PT that afternoon showed no signs of tenderness, swelling etc. we decided to let him rest overnight and hope for the best. But Wednesday morning same thing, won't walk and when he would try he would crumble to the floor, not in pain, so it's really weird. So after many dicussions Tues and Wed with Nicole the most wonderful and amazing PT from Children's (she helped diagnosis the tethered cord). She got us in with one of the Orthopaedic Dr's at Children's so we could avoid the ER nightmare. I love her!!!!

X-Rays, discussions and we are left thinking it's a toddler's fracture. Which is beyond frustrating because these often do not show up on x-ray. Good news, they ruled out a mass, tumor, or infection in the hip. But there was a discussion about is it something with the shunt, retethering of the spinal cord? I hate that damn shunt sometimes, it causes so many questions!!! Of course, it also saves Cameron so I can't REALLY hate it.
It's just so frustrating when there are so many other things going on with Cameron, a simple fracture, could actually be something else.

I left the Dr's office yesterday without a cast on Cameron. I asked him what to do and he gave me the option to wait till Friday to see if there is improvement or just do it then. In hindsight I clearly should have casted him. He is still not walking, and when I put his AFOs (leg support braces) on he will at least try to walk which tells me a cast would help him.

Tomorrow morning Cameron will go back to Children's and get a cast, for three weeks. Merry Christmas :)

I have to say that seeing Cameron crawling again is breaking my heart, he can walk and I want to see him do it again. Not to mention carrying a 28lb boy around is exhausting.

I am pretty sure we are dealing with a fracture but I won't be able to feel 100% about this until I see him walk again on his own.

So our Christmas wish is for Cameron to get better - FAST!

It's nice to be typical...

HERE IS CAMERON IN THERAPY, NOT MARDI GRAS I SWEAR!






We just celebrated Connor's Baptism last weekend, it was a wonderful day and I have to say just so nice and "normal". I realize that might seem like an odd word but it was just your typical get together with family and friends, there was no medical drama, no explanations needed about baptisms done in hospitals, Connor was just like all the other babies who were baptized. It was nice. For a brief moment as I walked through my house filled with everyone I thought to myself so this is what it feels like to be typical. It feels darn good!

On that note Cameron had his 2 1/2 year check up yesterday and he has grown alot!
2 1/2" since May 22nd. He is very tall (75%) and very skinny 27lbs. But he is doing great, it was so nice to be able to impress his Dr. with how far he has come:
She heard him say a word for the first time
She saw him walk for the first time
She watched him identify shapes...
and quite frankly she was amazed. She looked at me and said who taught him this, did you?

We talked about how far he has come and how he has defied the odds. As she reviewed his charts & made sure he was still getting all his therapies. She then showed me how his head circumference is growing on track and then said "after that scare he gave me thank god" I'll never forget that day in Dec 2006 she looked at me and said "his head is not growing anymore" I asked what does this mean, and she said his brain may have stopped growing we need to get him an MRI and I burst into tears in her office. But we have come so far, his brain is growing, he is making strides.

We walked out of there yesterday the closest thing to a typical family we ever have before...coming back in 6 months for the 3 year check just like any other child. What a nice, normal typical day.

Oh and then Cameron went screeching up and down the halls of the office bldg for 20 minutes, a typical two year old.

Next week we see Neurosurgery and Orthopaedics - I've got a long list of questions but that's what happens when we get to wait 6 months between appointments. That's a good thing.

Halloween in Riverside

Cameron and Connor really enjoyed their first "real" Halloween in the burbs. It was a gorgeous day. Cameron protested putting his costume on, but once we got him outside and he made his first trick or treat stop he was good to go with a sucker in his mouth.

Believe it or not he actually kind of understood the concept of trick or treating. At one house he even discarded his beloved dog at the footsteps to climb up the steps to get the goodies. It was hilarious, it was as if he said "forget the dog I want the sweets!"

If you can't tell by the photos Cameron went as his favorite stinky, much loved dog - "neigh neigh" as he calls him. Why he calls this dog what you'd think he would call a horse we have no idea? But that's his name.
Connor went as a "pea in a pod" and fell asleep on the trick or treat trail :)

We capped the weekend off with a haircut for Cameron - don't worry it's not too short, but we were bordering on mullet status in the back.
Saturday evening Connor gave us a bit of a scare, his body temp was very low 95.4 and he had been extremely irritable all day, not sleeping etc. The pediatrician sent us to the ER, he's totally fine. I'm just going to chalk it up to him wanting to check out Children's for himself instead of always hearing about it...

Other than not really liking to sleep during the day Connor is a sweet little guy, he has a belly laugh that is so contagious!

In other news we are going through some intense discussions with the therapy team about various things. Cameron's speech delay is our main focus right now, and trying to find out if he has something called Speech Apraxia. And then there's some other more involved stuff about him being "disorganized" inside, it's really hard to explain so I'm not going to get into it. We've got to make the most of these last 6 months with Early Intervention, and at the same time prepare for the transition process. Yet another thing I'm not going to get into right now.

As for the walking Cameron is doing really well, I can't say it enough, him walking has changed my life so much and is truly something I cherish every single day - to see him walk on his own is one of the most amazing things that has happened to us.

There are huge feelings with those small steps he takes.

Our Tall Skinny Boys...

Connor made a visit to the pediatrician for his "6" month (4 months corrected) check up earlier this month. He is following Cameron's lead, 5% for weight and 75% for height. 14lbs 4oz and 27". Maybe we have some swimmers in the making?

I have decided our boys will just always wear floods for the next few years, we need the smaller size pants for their waist and then of course the pants are above their ankles. Oh well, at least they are boys so they won't be slaves to the fashion world.

Connor is doing great, we are giving him one more month to hit some developmental milestones. If he is not on track the Dr. will then refer us to Early Intervention for an evaluation to see if he needs any services. Of course we are all hopeful there will be no need to add anymore therapies to this household! Truthfully, I think he'll be ok.

Today Connor spit up on his brother's head for the first time, it was very comical, well at least to me? Cameron just stopped in his tracks and looked at me like what was that? So we had an early morning shampoo at the sink.

Seems the cold season has hit our house with a vengeance this year, Cameron is battling an bronchial infection, after 5 days I finally gave in and we saw the Dr. he's using an inhaler now to help with his wheezing. As you may recall Dr. Reynolds, his surgeon for the diaphragm, said she needs to be informed if he gets a chest cold. While the pediatrican did say she could hear the weakness on the right side when listening to Cameron his pulse ox level was 95 so she said he's in no danger. We just need to make sure he gets better not worse and we'll avoid a trip to see Dr. Reynolds at Children's.

Connor of course is showing signs of this bronchitis thing too, which makes me think he really should have gotten Synagis but they said he didn't meet all the qualifications.

enjoy some photos from our recent visit to the Riverside Fire House... and the brothers being "brothers" aka Cameron ignoring Connor.

Tough Guy

Today was one of those long days at Children's 8:30am - 1:00pm. I know to some 5 hours might not seem so long, in 5 hours you can drive to Detroit (some of you are saying why would you drive to Detroit), watch two movies (we'd be lucky if we could watch one !) or be 3/4 of the way done with a typical work day.

In 5 hours Cameron had a kidney ultrasound, saw one of his NICU nurses(who said he still has the same face) endured a CMG (2 hours), saw the orthotist, set off a defibulator alarm while walking the halls of the 8th floor, and finally saw Dr. Yerkes his urologist and then hung up on the phone call she was trying to make from our room!

Good news... the kidney looks good, the CMG test which measures the pressures in his bladder, showed improvement from May '07 - great news. There is some question as to whether or not he is completely emptying his bladder when he voids but we are not going to worry about this right now.

We are all very pleased with this news, especially after the questions raised at the appointment 3 months ago.

I just have to say that Cameron is amazing how he deals with all of this stuff. The CMG is far from a pleasant test, and he was a model patient only crying when there was no other outlet for his pain. We hate to see him lying in the bed in pain with tubes going into places they don't belong. But by the time we sat down for lunch at 1:30pm Cameron took his first bite of Chocolate Chip Pancakes all was forgotten in his book!

How can Mom and Dad get in on that mindset??

Regarding his orthotics we are going to revisit this when we see Dr. Dias in November, for now they believe he's such a new walker we need to give him more time to possibly self correct some of the patterns he has. He will need to wear his AFOs about half the day - I'll be honest we let him take a bit of break over the summer...shh... don't tell anyone!

By the end of the day Dad looked at me and said I'm exhausted and I think that sums it up for all of us. But the good news helps to temper any exhaustion, and I know I say this often it's worth repeating: while I wouldn't wish our situation on anyone we are among some of the healthier children that have to routinely visit Children's and for that we have to be thankful and we will wish for more stories like ours to come out of Children's and pray for those who are struggling.

Walking Miracles

Today we went to the park to get everyone some fresh air since naps were not in the cards for anyone. I was on the verge of 'losing' it, after all it is Thursday, it's been a long week with the boys. But my frustration was soon replaced by joy. Cameron was walking everywhere once I let him out of our double wide stroller, it was amazing. I had to sit back for a minute and just watch him because I honestly have to say I was not sure this day would ever come. As I watched him walk across the entire park on the uneven ground filled with mulch just waiting for him to fall I was in awe. He didn't fall for a long, long time I truly couldn't believe it. I remember being at this same park in May and watching the other toddlers run around and wondering if that would ever be us, to see Cameron walk all on his own and not need any assistance was just a miracle. He wanted to keep walking anywhere and everywhere, so I let him, following behind with Connor in the stroller, he'd take a small tumble and get back up. I felt terrible when I had to cut this excursion off for the sake of Connor who was losing his patience with us and our walking.
I really never thought we'd be where we are and on those days when I'm not sure I can do this all again the next day I am going to remember Cameron walking all over the park and loving it! Having two kids within 22 months of each other is hard for anyone, add in Cameron's special needs and let's just say the guilt I feel at times could fill a very large garbage truck.
I feel bad that I can't spend more time focusing on what Cameron needs outside of therapy (aka therapy homework). But I remind myself with as many hours as this boy spends in therapy each week he needs a break to just be a boy and play or walk all over the park for an hour.
Other fun little tidbits about Cameron lately:
- Yesterday he discovered Mustard when I had it on my sandwich so today he had a mustard sandwich for lunch, he licks the mustard off the bread and then eats the bread. Sounds delicious right?
- He knows his colors pretty well, today he was going through our dresser and I asked him to hand me my orange pants. Dad was watching and was doubtful, Cameron dug all the way to the back of the dresser and grabbed them and brought them over to me. During therapy he often will match the colors on various toys without prompting. I don't know when a typically developing child gets their colors down but I am proud that Cameron know his pretty well!
- He loves to say "bye bye" and it's so cute how he says it, he also calls for "DAD" every morning from his crib when he wakes up.
- Every morning we wake up to Cameron and Connor babbling and it's the best wake up call there is! That moment in the morning when your kids wake up and you can hear them in the monitor babbling is one of the best moments in life to me. I want so badly to know what they are talking about. You can just hear the joy in their tones.
- When he sees Dad's car pull in the driveway he screams out "DAD". He is starting to say "Help" &"Out", I love hearing his voice and can't wait to hear more of it!
- He loves raspberries, we discovered we had a raspberry bush in the backyard over the summer and he would go pick them, now I am resorting to buying them in the stores something I always considered a special treat before kids b/c they are so expensive !

Connor is doing great, he is sleeping through the night - what a dream!!! Cameron took over a year. He is such a great baby, I am a little concerned about his development, one of the hazards of all Cameron's therapy history. I've had our PTs take a look at Connor and they think he's doing ok for his corrected age - I am just anxious and would like him to close the gap. We will discuss at our next pediatrician appointment.
Next Tuesday we have our appointments for the CMG, kidney ultrasound and urology - hopefully there will be no issues. I am a bit anxious given our last visit and not looking forward to putting Cameron through the torture that is the CMG - poor guy.

We'll update with any news on the kidney front next week. thanks for reading!



CAMERON AND HIS COUSIN MAUREEN WHO CAME FOR A VISIT!

We're Walking...

Cameron is walking more than he is crawling - YAHOO! This past weekend he really seemed to take off and always on his two feet instead of all fours, it was great to see. There are many falls but he just gets right back up and tries again, what a trooper. He also has just started with his new speech therapist and he's doing well I think they are going to be a great pair, she got him to say Bye Bye yesterday and now I swear he says it any chance he can when it's appropriate it's so great to hear him saying this. He used to say it a long time ago and then suddenly "lost" it so we are delighted to have it back!
AND I have the walking on video - finally!!! enjoy...

Photo and video editing at www.OneTrueMedia.com

Also here are some cute photos from a recent pizza party at our place with some friends. This is Cameron's future girlfriend Maggie, as you can tell he's playing it cool but I think we all know he was into her.

Annual Review

Cameron just had his annual review and we gave him a raise, I mean he has been working overtime for the last three months so it was needed.
In all seriousness he really has been working hard with 6 therapies every week - yes that's right SIX, which means that yes some days we have multiple therapies. Despite the tough schedule he does very well and is very tolerant of the many sessions. Best of all we see him making progress.
During his annual IFSP (Individualized Family Service Plan) meeting this week his entire team of therapists met at our house and we reviewed his progress and recent evaluations. Now we could get bogged down in the numbers and if you did that you would think things aren't so great, but we don't let the percentage of delay or age equivalents get us down because quite frankly some of these tests are ridiculous, and the therapists agree. But we also don't have our head in the clouds, Cameron is developmentally delayed and needs work. He is doing really well in Occupational Therapy, so much so that we are cutting back to every other week. Speech and Physical Therapy are his weakest areas he is 50% delayed in both areas and the age equivalent of a 10-13 month old in some of these areas. We will continue with PT 2x/week and add another session of ST each week as a result.
Here is the plan: OT 3x/month, ST 2x/week, PT 2x/week, DT 1x/week, DT/ST Group 1x/week.
Cameron is so great about all these therapies which makes it much easier, of course do we wish we didn't have to map out a crazy schedule like the above? yes, but we want to make the most of this last year of Early Intervention before Cameron is integrated into the school system.
Cameron is working hard on his walking and it's so great to see him upright more and more often. He is also picking up a few new words/sounds - the average person probably couldn't understand some of what he says and at times I am thankful for this - for instance one of Cameron's favorite things to say is "I Stink!" and he doesn't always use it appropriately - say when you are in the grocery store? He just says it loudly and proudly, and the thing is he doesn't even stink! But I find it cute and endearing and I am 99% sure that no one else even understands what he's saying :)

Connor is doing great, he's growing so fast. Up to 13lbs at his check up last week which is 10-15% percentile for his age - overall the Dr is very happy with him, and so are we. He is such a good baby we really feel so blessed to have such a happy and healthy little guy.

So that's the wrap up for July...

Poll Time - Cameron's Hair

For those of you who are local the Chicago Tribune recently had an article about boys and long hair and how that is the new "trend". We receive many comments on Cameron's hair that range from "where does he get those curls" to "I see your mom still hasn't taken you to get a haircut!" to my favorite "He has a reverse mullet"

For the record Cameron has had two haircuts in his two years of life and he didn't mind them. Mom and Dad happen to prefer the wavy curls of our Chicago surfer boy but yesterday his hair really looked out of control (as you can see above)...

So we'd like to take a poll should we cut Cameron's hair or let it go as it will which is just about every which way!!

Happy Father's Day

Yes, we're a bit late with this post!
Just wanted to send a happy father's day to all the dad's out there. And a very special Father's Day was had at the Dominick House - it was the FIRST Father's Day not spent in the hospital! Cameron was still in the NICU for our first father's day and last year he had his spinal surgery so Matt said to me on Sunday that he didn't want to bring it up out of fear of jinxing it. A Very Big Happy Father's Day to Matt, he's definitely father of the year around here!!
Dad ran in a nice 5K Sunday morning, given the torrential downpour the race was delayed so we got to spend some quality time at the Morel's house (thank you guys!!) Cameron was surrounded by their three beautiful girls, he definitely enjoyed himself and tasted his first crepe - YUMMY!
After the race Dad enjoyed a trip to the spa for a massage and we capped the night off with some Lou Malnati's Pizza, a family favorite.
Enjoy some photos of Dad and his boys in the recent weeks

the big brother...

Is taking his duties very seriously, he is learning what it means to be gentle. A rough pat on the head and jamming of the pacifier in Connor's mouth need some tweaking but if you tell Cameron "gentle" he nicely corrects the behavior. He will give Connor a kiss good night and Connor seems to enjoy Cameron most of everyone in the family.
Cameron was waving at Connor and that brought a smile to Connor's face it was really sweet.
We are still working on the walking and I still have no video to share...soon. But I do have video of Cameron using his super duper Walker! He knows exactly what to do and he even has a special parking spot for it in the living room it's pretty funny.

I know everyone says their kid is smart, and Cameron is no exception, speech is lagging but his receptive language is really impressive. If I tell him it's time to change his diaper he often points to the actual bathroom and yesterday went and got the diapers and wipes for me without request. Oh and he's also good at proclaiming "I STINK" it's pretty darn funny.

We saw the urologist and nephrologist (kidney) last week, the kidney continues to grow and his creatinine level is good. The ultrasound of the kidney showed a new potential concern that the kidney might be refluxing which is bad, but they did another ultrasound while we were still there to double check and the cause for concern diminished. We will do another ultrasound in September and the nasty CMG test to be sure everything is as it seems.

My anxiety level shot up when this issue was first raised as a VCUG and surgery were mentioned but for now it appears these things are not on the horizon, but I will feel much better after September's tests.

It's interesting how Dad and Mom react differently to Cameron's health concerns. When Cameron starts throwing up Dad goes into a bit of freak out mode and Mom stays calm, even in the hospital Mom tends to be the calm one and Dad wonders why Cameron is taken off all foods and fears surgery. But when we go to our clinical appointments it's Mom who freaks out, I am still worried about this kidney issue and Dad is telling me it's fine.
I guess it's a good thing we've got each other and don't freak out at the same time :)

Connor is doing really well, he's growing fast and is a good baby, despite his need to constantly be held during the day but we can't complain because he's so darn cute!

Make an on-line slideshow at www.OneTrueMedia.com

Cameron Turns Two

Can you believe our little guy is two years old?? We can't, he has come so far!
And we couldn't be happier to share the news... he is actually taking a few independent steps, it is such a joy to see him try to walk. He's a bit wobbly on his feet and his trunk strength needs improving but our boy will walk!!! Ironically we received his walker on Friday the day after his birthday and he loves it, motoring around the house. It was always a goal of ours that Cameron would walk by the time he was two, and he's getting there bit by bit. I am going to try to get him on video walking to post it, so far my attempts have been unsuccessful as he gets so excited to grab the camera he drops to his knees and starts crawling to me.
We have had a very busy birthday "week" last week, Cameron had his 2 year pediatrician check up and is 26lbs and 34" -- he is officially off the preemie chart YAHOO! We also saw the Orthopedic Surgeon and they are pleased with his progress and definitely think Cameron should continue to wear the leg braces (AFOs) we will see them again in 6 months. So now we just need to get through our kidney and urology appointments next week and we will be free of Dr visits till September. Well at least planned Dr Visits!
Which brings me to the unfortunate turn of events this past weekend... after a wonderful birthday party on Saturday Cameron started throwing up around 10pm, and to be honest we were just chalking it up to a crazy party day and maybe a little too much frosting. But it kept up for over two hours and we had to place the dreaded call to the Neurosurgeon, and well you know how this story ends by now if you've been following along. So off we went to Children's at midnight not to return home until Monday afternoon - what a way to spend the weekend. It was two years to the day that Cameron was admitted to Children's so this trip down memory lane was not very fun. Cameron was not in good shape, his fever would not come down, it was the worst we've ever seen him. There were growing concerns, blood cultures and taking him off all foods in preparation for an emergency surgery. Sunday was a long day to say the least, but we were relieved on Monday when he started to act like himself and the fever was coming down.
Cameron started charming the nurses and we knew we were back on track.
The culprit: some sort of nasty virus that he still has not shaken but I told Dr. Bowman given that he was acting better and no fever we wanted to get home.
So this story will repeat itself and that is what sucks about life with hydrocephalus, you just never know if it's going to be the shunt. These trips drain the life out of us, we don't sleep and are left eating McDonald's from the basement of the hospital. Matt said he is not eating it again for at least a month :)
I had planned to write Cameron's birthday post about all the funny stuff from the party and or highlights of the past year but to be honest I am so tired I can't think straight.
All that matters is Cameron is home now and on the mend, we are all back together as a family and hopefully you'll enjoy the video below with some great photos from the party and "happy" Cameron at the hospital, he requests no photos during the icky times, naturally!

Photo and video editing at www.OneTrueMedia.com

Suburbia...

Sorry it's taken so long to update, but moving to a new house with two kids under two and a crazy dog...I don't recommend it!

But we made it, we are officially suburbanites. It's been a whirlwind ever since Connor came home but we can't complain.

Cameron had his yearly follow up with the pediatric Surgeon Dr. Reynolds to assess the diaphragm growth and it remains stable. This is great news! We are to come back in another year unless Cameron becomes symptomatic or develops any sort of pneumonia.
On the same day Connor had his head ultrasound as a follow up from the one done at birth and he too is just fine!
It was truly the best visit ever to Children's for us - two kids, back to back radiology appointments followed by the surgeon visit- we were prepared for at least a two -three hour visit. We were in and out in 60 minutes, unbelievable! Nana and her friend Cindy were there with us and I told them they must now accompany us to all appointments!!
The packing and moving process was of course chaotic but with the help of Nana, Grandma Randi, Grandma Ellen and Cindy we made it. We are so lucky to have such wonderful support and help.
Connor is doing great, he is now up to 7lbs 10oz, we could not believe it. His due date was May 11th so he is now officially 40 weeks! Based on such good weight gain we don't head back to the pediatrician until May 21st, where both boys will get their check ups - Cameron his 2 year and Connor his 2 month.

We are still waiting to get a therapy team together in Riverside, hopefully soon as it's making me quite anxious. Also still waiting on the walker, I think Cameron will love it. He is getting really good with standing independently, taking a few more risks here, it's great to see his confidence building. Above is a photo of him standing all by himself in his "leisure suit" from his godparents Amy and Mike. He can stand alone for about 10 seconds and will take about 3 steps independently from time to time, he's very wobbly but he is taking steps!!!

Cameron has quickly taken to the new house and loves that there is a park right across the street, which has started to pose a challenge when we want to take a walk he starts screaming and pointing to the swings. Oh life with a two year old!

I welcome any and all advice on how to discipline a two year old!

Welcome Home Connor!!

Connor came home to the chaos that is our house on Sunday April 13th at 4pm. It is SO wonderful to have him home and not be making daily trips to the NICU and having to leave him there.
When we walked in on Sunday his favorite nurse Lauren was cuddling with him and saying she didn't want him to leave, but we had other plans.
He is doing great and Cameron seems to enjoy his new brother. He will point at Connor when asked "where is Connor". Cameron is definitely approaching the 2 year old stage but he has been nothing but sweet to Connor, hopefully this will last :)

Today we go see the Pediatrician ...thanks to everyone for all of your support on round 2 of the NICU experience, although this time seemed like a breeze compared to round 1. We must be thankful for that!

xoxo

A week later

Here's Cameron showing his little brother how to be the cool guy...



Things are getting better, I mean they had to right!
Mom is starting to move at bit faster than a snail and Cameron seems to be adjusting back to life prior to Feb 1st. When he pointed to me when Dad asked where is "Mom" I was so relieved :)

He was measured for his walker and apparently it's going to take at least two months, maybe he won't even need it then? We can always hope.

Connor is doing well, the nurses got a bit aggressive and told me earlier this week he might be coming home as early as Friday, I was shocked and worried. He went about a day without his feeding tube in, but it's back in and he gets so tired trying to eat on his own. In addition he has Apnea spells (he stops breathing and his heart rate drops) whenever I try to feed him which makes me very nervous. The rule is he has to go 5 days in a row without any Apnea spells before he can come home. But they don't count the ones when he is feeding, um well I do! Of course he also has to be completly off tube feeds.

Regardless he's not ready and we are fine with this because the last thing we want is to get him home and then have to send him back.

Growing, feeding and losing our minds...

There are many reasons for the delay in posting updates, and we'll keep it brief because we are all extremely sleep deprived.
Connor:
* Doing well and weighs in at 4lbs 14 oz as of today. He took his first bottle of 20ccs
* He is on and off of the photo therapy as his bili levels continue to go up and down, right now he is back on the lights
* He was moved into an open air crib last night, no more incubator/isolette
Really he's just growing and needs to learn how to feed and he should be able to come home, we suspect sometime mid-April.
* Riding the preemie roller coaster again is no fun, but we feel blessed that is not struggling with anything more. Leaving him at the hospital is very hard.

Cameron:
* The day mom came home from the hospital Cameron got the Flu - made for a great easter weekend of throwing up. We did the usual call into the neurosurgeons but all felt pretty confident this was just the stomach flu and saved ourselves a trip to Children's.
* Received his new orthotics (AFOs) we are not sure about these and will review their use with the PT on Monday.
* He is going to measured for a walker in the coming week
* He is working really hard on some words, it's very cute and he loves to dance and it's just so wonderful to be at home with him and see him do all these things instead of hearing them through the phone
* He was able to go from sitting to standing on his stool in PT last week but we have not seen him take any steps on his own like he did during the one PT session a few weeks ago, but we know he's close

Mom:
* Another trip to hospital hell and emergency surgery early Friday morning around 12:30am for an umbilical hernia. It took from 11am to 7pm in the ER, multiple tests, CT scans, and general "not fun stuff" to get this diagnosis and the decision was made to repair this immediately to prevent major problems from developing. So mom had surgery at 12:30am on Friday and was in recovery by 2:30am and demanded to go home by 5pm Friday evening, thank god the wonderful Dr agreed to let me go. So just as I was getting back on my feet after childbirth I am now slammed back down and not supposed to lift anything more than 20lbs for 4weeks. I am in a ton of pain but trying to keep moving around so I don't get so stiff. UGH!

We have to believe that we have now played all the "bad" cards and this insanity will end.