We have all heard the saying about the month of March – “In like a Lion and out like a Lamb” well, the Rissland’s certainly “lived” the month of March just like that. Let’s just say March really sucked! First of all March is the worst month for RSV. You remember me telling you about that virus way back when and that the boys get RSV shots from a nurse that comes to the house. Well as much as we were in and out of the pediatrician and all the drugs and nebulizer meds the boys were on; they could have very well have been diagnosed with it, but they weren’t , thank god. C&C continued to get ear infections due to all the bronchiolitis they kept getting (6 infections each since December) so we made an appt with the ENT for mid March. I told the ENT doc last summer when Reese got her tubes and when I was pregnant with the boys, that he may as well just meet me at the hospital when I have the boys and he could just put the tubes in because I would probably be back on his doorstep in 6 months due to our history . Well, I ended up on his doorstep in 6 months and they both had double ear infections that day! So the doc says yes, they need tubes and I say “Can we do it today?” hee hee! Folks, tubes are a cure all (at least for us) for this crazy mucous crud crap that goes around and can’t seem to come out of their nose and throats so it settles in their ears and wa-la – recurring ear infections! So the boys had their ear tubes on March 30th. I cannot tell you how excited I was to get that done. But getting to that day of surgery was tough. Both boys are wheezers (Reactive Airway Disease – RAD) and if they had any sign of bad wheezing for the pre-anesthesia on the day of the surgery we would have been sent home. Well I was NOT going to be sent home on surgery day, so I did everything I could to keep these boys well, otherwise the anesthesiologist would have encountered the wrath of Fran! Unfortunately they were put on steroids as well as antibiotics to get us through to March 30th. Well, we made it and the tubes are in. I cannot tell you what different babies we have now. They are so much happier, eating better and back to sleeping through the night. When they were sick they were up again at night – not fun for us since we had them sleeping through the night at 4 months. Now, we deal with teething…
Speaking of Teeth… Chance has his first 2 teeth! Funny how you think one will hit milestones sooner than the other but then you are pleasantly surprised. Since Chance had the most trouble when my water broke and he was hanging on the cord (won’t ever forget that story hence why I did started this blog) and then being delivered his apgar’s were not very good until about 25 minutes, I always thought he would be behind Colin with milestones but for teeth he is not J Since Karl and I have ‘been there done that’ with Riley and know what to look for when babies are not hitting milestones and when to seek help, we will certainly get our little guys help if needed since they were preemies. I lived at CHOA in the early years of Riley’s life (still do his therapies privately in addition to school) so if we need to do therapy then we do it, ‘nuff said… Early intervention is the key!
St. Patrick’s Day
This is how Karl and I celebrated St. Patricks Day after the kids went to bed. A beer and a shot and then we passed out as we were exhausted…
Exceptional Children’s Week
Riley was in a school production for Exceptional Children’s week at school. All the special needs classes participated. The production was called “Life is a Highway”. All the classes did such a great job! There wasn’t a dry eye in the house. Frankie, Erin, Unc, David, me, Karl and Reese attended. The boys stayed home with Nanny Jacoba. Riley is the middle pirate on the right.
Thank you RSV nurse Ann! She certainly made my day on April 5. I can take the boys ANYWHERE now and I cannot tell you how thrilled I am. The weather is much better now and RSV season is pretty much over. April is the last month of the RSV season and they will have their last injections. So I am in the clear and have freedom to go wherever I want when I want. I have been waiting for this day for 8 months. Our first stop? The kids club at LA Fitness of course! The boys did very well and pretty much slept the whole time. So what was I worried about? Nothing really. You’d think I would be over the part of leaving my kids for the first time since I already have been there done that with R&R but I did. I know I will be worrying about my kids the rest of my life.
So I have to admit I was a little concerned about Spring Break as this was going to be a test of how summer would be with all four kids home at the same time. Of course this was a week that Karl was in the office quite a bit. I had activities planned for R&R all week to keep them busy and I handled it pretty well. I even took all 4 kids to an inside play place and to lunch afterwards for a play date. Yes, daring, but I did it – so it can be done!
Riley’s Bravo pH probe procedure
It has been a while since Riley had his acid reflux checked. The last time it was checked was about 3 years ago. When he was diagnosed with CdLS he had a pH probe inserted in his nose, down his throat and into his stomach. No I was not in the room to experience that but waited in the hallway while it was being inserted. It doesn’t hurt (or so I am told) but a little uncomfortable. Funny thing is Unc came with me for that procedure as Karl was traveling. He said he would stay in the room with Riley since I just couldn’t see Riley be uncomfortable. Well, after I left the room guess who came running down the hallway after me about 2 minutes later? Unc! He couldn’t handle it either. Basically that first probe he got at 19 months old tells you when, if and how severe he is refluxing. 95% of kiddo’s with Cornelia de Lange syndrome have reflux so this is a must do procedure as we needed that information. Riley had to keep that probe in for 24 hours and a recorder on him for that time period as it was recording what was going on. It came back that yes he has reflux but it wasn’t very bad. The GI doc put him on prevacid to control the reflux. Riley did well with the prevacid. There were times he would have episodes of arching or being upset (those episodes were not fun) but they weren’t fun because he couldn’t tell us due to his developmental delay in speech but Karl and I knew what they were. Basically a dose of Mylanta would help and do the trick to get him through it.
About a year later we decided to do an upper GI since Riley was going under for a second set of ear tubes so why not get the information to see how the prevacid was working. Basically it told us the same thing but that he needed more meds. The GI then put him on zantac as well. He was on zantac for a while but then taken off several months later after another follow-up since there weren’t any issues. So basically Riley has been on prevacid for 4 years without any issues that we can see. During our yearly follow-up visit this past February, we talked about going in again and seeing how Riley is doing with his reflux. So we scheduled another upper GI and something called a Bravo pH probe. A Bravo is a small recorder that is pinned to the esophagus while the patient is under general anesthesia. A recorder is worn (just like the other probe) to record if someone is having reflux and when, if, and how severe it is. After the upper GI and Bravo placement the doc came in and said his esophagus and stomach look great but he has some white patches in his small intestine which look like possible ulcers. He biopsied them to get more information and would call with the results. Riley did well with the procedure and wearing the recorder. We put it in a fanny pack. He thought it was the coolest thing and wouldn’t part with it, thank goodness. A couple of days, after we dropped the probe off to download the results, the doctor called. The Bravo basically told us what we already know – he has mild to moderate reflux and the ‘white spots on his small intestine are irritated but the results were non-specific and they want to do a blood test for Celiac Disease. Celiac Disease is when you are allergic to gluten which is found in breads, pasta, cookies etc. http://www.bing.com/health/article/mayo-117393/Celiac .” I am puzzled” I told the GI. I knew some of the symptoms of Celiac Disease but he gave me a few more: vomiting, diarrhea, malnourishment, not growing, doesn’t eat well etc. Riley does not vomit, only has a loose stool if he has the stomach bug, eats like a champ (everything and anything) and gained 9 lbs last year. So, Celiac Disease? I know you can have all, some or no symptoms of certain diseases/syndromes etc. but seriously? Well, now Riley has to have blood drawn for testing of Celiac Disease. I will do whatever I need to do to figure out what this is and if it is CD then we will cross that bridge when we get there but…. Celiac Disease? Will keep you updated in a later post…..
North Metro Miracle League
Riley is on a new t-ball league. Several of his friends from school have been doing this league and we decided to give it a try. So we switched from the other league he was playing on to try this one. He plays on Saturday mornings and really loves it. It is at an adapted sports complex called North Park. They play on Astro-turf to accommodate wheel chairs, walkers etc.
Riley has been taking private swim lessons at the Y for 2 years now. He has a wonderful instructor, Miss Andra, that has taught him so much. He loves the water! This year Andra is teaching Reese to swim at the same time as Riley. Andra teaches special needs kiddos to swim and often takes on their siblings to help their sister or brother swim and of course she teaches the sibling as well. It is so wonderful to see the two of them learn to swim together. Reese has no fear of the water (scary) and swam pretty well (with a floatation vest) last year. We feel she will be swimming well very soon. She has certainly helped Riley. I can see a big difference in his swimming when she is with him. She needs to learn quick especially since I will have all 4 kids at the pool this summer several times a week.
Several of you have asked me about Hippotherapy. Hippotherapy is therapy on a horse. Riley has been doing Hippo since he was 3 years old. I am convinced this is what made him walk. He started walking one month afer starting. He absolutely loves it. He does this once a week at a barn about 30 minutes from our house. This photo was taken last week. A high school gal was at the barn doing a research paper on Hippotherapy. I answered some questions for her and took some photos.