June… a little late


Party of 6


Yes, that is what the Celiac Disease test came back as – NEGATIVE! Thank goodness! I wasn’t sure what to think with this one but had the attitude that if it was positive this would just be another bridge we would cross but I can cross this one off for Riley. So we still don’t know what those insignificant white spots are on his small intestine so the GI doc wants to re-scope again in July to see if they are the same, better or worse. His prevacid dosage was increased so hopefully that will help too. Riley also had an MRI done of his spine. This was done for informational purposes only. One of the characteristics of Cornelia de Lange Syndrome is hirsutism which is excess hair on the body and Riley has a lot on his back up and down his spinal cord. The orthopedic doc said that even though we know it is common in CdLS it could also mean tethered spinal cord syndrome. The MRI came back fine and we don’t have to worry about that either.

My boys are wheezers

So you read about Riley’s adventure to the ER and his overnight stay due to that horrible asthma attack the last day of school. After a week of steroids (steroids are not fun for us … for those of you that ask me if Riley is ever upset or has tantrums, he does and with steroids it was escalated (I know you all don’t believe me but it is true). He is fine but now we move on or should I say back to Chance and his wheezing. I feel like I could be at the ER at Scottish Rite every 3 – 4 days due to him wheezing. I should mention he is a happy wheezer and is never in distress. Since I have been thrown into being educated about RAD and Asthma (maybe I will go back to school to be a Respiratory Therapist someday) I know what to look for and there have been times I have been on the fence asking myself, should I or shouldn’t I get him in the car and head down 400? So I called the ped and scheduled a visit (again) about his wheezing and took him in. You are never going to guess what they want to test him for? Cystic Fibrosis. Kids with Cystic Fibrosis are persistent wheezers but also are failure to thrive and my little dude is nowhere near little anymore. At this appt he was over 18 lbs with clothes on. Doc needs to rule this out before we are sent to a pulmonologist which I already have scheduled for the end of July. We did the sweat test that tests for Cystic Fibrosis. They hook Chance up to a machine that will make him sweat and then test the sodium chloride (salt) from his perspiration. If it is high, he has it. If it’s not high, then he doesn’t have it as put to me in layman terms.  Later that day after the test we received a phone call from our doctor saying that he needs to go back in for another sweat test as they didn’t get enough sweat.  You’d think they would know that once they collected it but they said that sometimes they think they have enough but they don’t so I have to reschedule this again.  Not like I don’t have anything better to do, whatever…  The other interesting thing I learned is that the ped asked me if Chance was still on prevacid. I took him off about 2 months ago because there weren’t any signs of reflux anymore but I had backup meds in case he started again and I could put him back on it quickly. She mentioned that sometimes reflux could irritate wheezing so we decided to go ahead and put him back on while we are waiting on the sweat test. Would you know that Chance has pretty much stopped wheezing? Go figure! Will update you next time and let you know the outcome once they do the second sweat test.

Summer is going well

Riley and Reese have been in camps since school has been out, literally like the following Monday. It has been a lifesaver for me since I wasn’t sure how it was going to go with 4 kids all day all summer long. They are in camp for about 4 hours Monday through Thursday. I would of course have the boys with me to hit the gym and run any errands I needed to do before picking them up, then we would swim in the afternoons a couple days a week after Reese and the boys took a nap. Ok, you are all asking how do I go to the pool with 4 kids. Well, I don’t go by myself. I will never go to the pool this summer without someone with me as I would be setting myself up for failure. It does take two people and I have gotten pretty efficient with only bringing a double stroller, one pool bag and a small cooler. In addition to my wonderful helpers (Allison and Sydney) our neighbors are just amazing. They always ask how they can help. We are truly blessed to be in the neighborhood we are in – Pinewalk Rocks!

One of the camps this summer was a special needs camp I found for Riley through FOCUS. It was a great experience and Riley had a great time. On the final day of camp they did a presentation for the parents. Here are some photo’s from the presentation.



At least 50 times

That is how many times I was asked “Are those twins”? at the GA Aquarium. Microsoft had their summer party at the aquarium. We took everyone and had a great time. Karl and I have decided we may have to purchase ‘leashes’ for R&R for outings like that.  When I wasn’t a parent I always thought how cruel to do that but now I understand why parents will leash their kids.  They were all over the place and we were paranoid of losing someone. We saw several families with leashes (they actually are cute little animal backpacks) and wished we had them. Leashes may be in our future when everyone is mobile and doesn’t want to be in strollers anymore.



Speaking of being mobile

The boys are army crawling and are getting fast! Colin started and Chance followed 3 days later.  They are sitting up well but I still use the boppy’s around them as I fear that Riley or Reese will trip over them or be playing rough, or simply just push them over – kids will be kids. You never can tell what might happen so I am cautious. Based on milestones for their adjusted age of 8 months they are hitting their milestones.


Similac Neosure Preemie formula is officially done!

And Karl and Fran just got a raise. At $16.99 a can x 1 can a day x 5 cases (6 per case) a month you do the math. It was not cheap. They actually officially graduated from the preemie formula at their 9 month well check but I had some cases left so we just finished them up. We are now on regular Similac Advance which I can now purchase from Costco. In order to keep an ample supply of the preemie formula I had to order from diapers.com. That’s one milestone I can mark off.

Rosann Arrives

So glad to have Karl’s mom here! Camps are over for the next 3 weeks so now we will turn our attention to really taking advantage of going to some of the FREE summer movies for kids, puppet shows, childrens museum etc. I’ll have that extra hand to either stay with the boys so I can take R&R for some of these activities or we can all go together and I will have the extra hand to help me. I know she will have a great time hanging out with us. There are days I could really use an extra hand and we are thankful she is here. It will be nice to get some things done that I haven’t been able to accomplish and just be able to ‘leave’ the house by myself if I need to run to the grocery store, etc. Rosann is officially retired as of this past March. Her house is for sale in Kent, Ohio as she is going to move down here. We are casually looking around for a house for her but she needs to sell her house first. We all know how the housing market is right now so it may take some time but we are trying to keep an eye out for her if something happens fast if she sells her house.

No, I didn’t get into trouble with this firefighter

But you are going to laugh when I tell you this story. Every 4th of July our neighborhood has a 4th of July parade for the kids and there is a fire truck from one of the local fire stations that leads the kids, adults, family pets etc. in a parade through our neighborhood. At the end of the parade as we were letting the kids crawl onto the fire truck and take photo’s, one of the firefighters “Scott” saw Karl with the twins. He started asking Karl some questions and realized those were the twins that they responded to with our frantic call to 911 the night of August 17th. He was one of the firefighters that came to my rescue. I of course asked him if he was one of the paramedics that was ‘intimate’ with me that night (if you are just reading this blog for the first time you need to read the beginning to know what I mean by being intimate) but he wasn’t. He said they still talk about that night and still can’t believe how calm and comical I was about the whole thing. I am planning a visit to that fire station on the twins 1st birthday  to say ‘thank you’. I can’t thank them enough for what they did that night.

4th of July Fun

What a great day! Parade in the morning, cookout at our neighborhood pool in the afternoon, fireworks around our neighborhood at night and Karl camped out with R&R in our backyard. Long day for the kids but so worth it!


And now we are off to Jamaica in a week – Ahh…  Paradise he we come!  Will have lots of photo’s from our trip and updates from the grandparents on how the week went while they watch the kids.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s