Are we there yet?: July 2011

....and I will cry if I want to!

For the first time in as long as I can remember, I decided to take my birthday off and hit the pool with the kids! It was a gorgeous day, and we SPLURGED on the Stapleton puddle jumper pool. And when I saw splurge, it isn't much of an exaggeration. As I mentioned before we get a lot of the benefits of Stapleton living in Park Hill, but the outdoor pools is not one of them. They seriously must fund everything else all year round with outsider pool admission! Okay off my soapbox, we had never been to the puddle jumper pool, and it lived up to the rave reviews. Perfect for Annabelle she could touch he bottom in almost half of the pool. And while we had to keep a close eye on Madelyn, simply because she has zero fear, she still had an absolute blast. I was super excited to try out my birthday gift from my parents {a new lens} and I got about 300 amazing shots of girls playing {and some of Avery & Vivi who we ran into unexpectedly.} Unfortunately when I got home to load them, the camera card was corrupt, and poof they were gone! As you know, these situations are enough to bring me to tears. Hence....

Its my birthday, and I will cry if I want to!

But after Madelyn's clean bill of health yesterday, life is in clear perspective, and I will look forward to the next chance to practice with my new lens. And this mishap might just be an great excuse to take another morning off to play at the pool!

post signature

Let me start by saying that Madelyn is fine!!! However we did have another medical scare that I chose not to immediately share on the blog. Since this is where I keep our story, it feels wrong to skip a chapter by not posting Mady's latest medical scare. Most of this was the raw emotions I was feeling, and I am not going to edit, so hopefully it makes sense.

This is the email I sent out to a few family members on April 25.

Madelyn had her one year doctor's appointment on Apr 15, and in that well child visit, they did the routine foot prick blood test really only checking for anemia. Well Madelyn being Madelyn was not anemic but her white blood cells & platelets came back through the roof. Dr. Gini quickly came in and took one look at Madelyn acting like a perfectly healthy normal one year and was instantly perplexed. She asked us if she had been sick in the last week - nope. Then we proceeded with the appointment. Everything else looked right on track - eating, sleeping, growing, etc. She was perplexed. Next we did a repeat blood test to see if the machine was wacky...nope. This type of elevation is classic of an infection or allergy. Well she said, I might just have a crystal ball and she could be on the brink of coming down with a virus, so have fun tonight, because you might be in for a long weekend. Come back in a week to re-check & get her immunizations....So we headed out to dinner, and were expecting the other shoe to drop... except... nope. it. did. not. We went back in last Friday, and I have to admit I had a bad feeling that nothing was going to have changed. Dr. Gini came in and told us the results were in fact the same, and we had to figure this out. She sent us to Children's (at St. Joe's - ugh bad memories!) for more blood test... and reading Leukemia on that paperwork, was one of the worst moments of my life. Needless to say it was a horribly long weekend. We tried to carry on ignoring the elephant in the room (after a VERY long cry on Friday night) and for the most part a busy weekend kept us simply enjoying the girls. It was hard for me to imagine that our happy little girl could be really seriously sick. But I read enough blogs to know life can easily change in an instant! Well when Scott called today and was told we should come in without the girls to talk - my heart sank! Thank g-d, Scott realized that Dr. Gini had left us a message on Saturday on our home phone that we never check, and she said she didn't have a lot of answers, the test were inconclusive but we needed discuss the next steps. The message led us to believe that Mady wasn't in immediate danger because she didn't have an urgency in her voice, so that did calm me down a little. We met with her tonight after her already long day ended, and here is what we know... Madelyn does not have Leukemia. BIG DEEP SIGH OF RELIEF. It also doesn't appear to be an allergy. She does still have abnormally high white blood cells & platelets. Which leads to one of three things... 1. she was exposed to a confirmed case of pertussis (whooping cough) late in Feb, and according to the hematologist this reaction could be from the pertussis. Madelyn didn't present with full blown pertussis symptoms, but we did take her in about a week later because she did have cold like symptoms, and it is possible she what she had was pertussis. They treated her as if she did as a precaution due to her history, but we never tested her to confirm. This would really be the best answer. Or 2. downs syndrome, I know, we were as shocked as you are reading this! Apparently this type of reaction is also more common in downs. She exhibits no visual signs of downs, and she is meeting / beating her milestones which generally wouldn't be the case in downs. Dr. Gini initially said no when the hematologist asked if she has downs, but then she took pause and thought could we have missed it? reason being the other indicator that she might have downs is/was her heart murmur at birth. That type of heart murmur is apparently common in downs, but can also be common in non-downs. It was noted in her medical records by many doctors, including multiple pediatricians in our office, doctors at children's during her human metapneumovirus stay, as well as the cardiologist as specifically not having downs... but there is what they call mosaic down syndrome, and it is possible that could be what she has. Mosaic simply means that only a portion of her cells in her body have the extra chromosome. It could be 5, 10, 15, etc % of her cells, but the percentage doesn't correlate to how well the downs person functions. By all accounts Mady is a highly functioning kid, and Dr. Gini said that wouldn't change. Dr. Gini said she has NEVER diagnosed a kid with mosaic downs. Generally that is either determined in an amino during pregnancy or it goes undetected until adulthood, when someone has a downs baby, and in search of answers they then have genetic testing done. So we are having a genetic test done to determine if in fact Madelyn does have mosaic downs. This will send us down a path of meeting with a downs specialist to ensure that we know what to keep an eye out for as downs does have some potential medical implications. And of course we will still need to try to figure out what is causing the abnormal blood counts, but the specialist might have some better suggestions. And finally 3. We have NO idea. So we will go to a hematologist and let them figure out where to go next.

Next steps:

1. Genetic blood test, probably tomorrow, and we will not have the results most likely for 10 - 14 days. If positive this will impact what we do with information from step 2.

2. We get to re-check the blood in a month. If back to normal, we assume it was the pertussis. And we will thank Madelyn for the collection of grey hair and add this to the long list of stories to tell her over and over again in agonizing detail! If the results are still elevated then we will head to the hematologist (& depending on the results of the downs test, the downs specialist too.)

So....
No need to call, write, or do anything, I just wanted to let everyone know... I really don't have any more information other than what I shared above. Please if you google any of this... I don't want to know what you find. I am going to just have faith in our medical team, and try to take this one step at a time. My brain can't process much more tonight. For now, our little girl is doing well, the elevated blood cells aren't dangerous, they are simply an indication of something else that we have to sort out. We are so grateful to Dr. Gini for spending so much time with us tonight answering every question. She was sincerely concerned about Madelyn on Friday & over the weekend, and wants to find answers. She personally called the hematology department on Friday night and told them they had to get back to her, because she couldn't make sense of it. She gave us her personal cell phone number to ask any questions that come up in the coming weeks, and we feel very confident in her care.

April 29 -

We got the results back on the genetic blood test, and Mady does not have mosaic downs. So now we wait until the end of May for a repeat of her blood work and hopefully we can chalk all of this up to a virus!

June 1 -

We retested Madelyn's blood work, and while it is going in the right direction, it has not yet returned to normal. Dr. Gini consulted again with Hematology at Children's, and they are pleased that she is gaining weight and the counts are going in the correct direction. And so we will yet again wait another month or so to retest.

July 19 -

We retested Madelyn's blood work {again,} and this time they ran some additional blood work that would provide more of an indication of what she was fighting - so 3 more markers to review. Her platelets are back to normal, and 2 of the 3 markers were normal, the other was just slightly above normal but not really concerning, however, her white blood count was still double what it should be.... so we are heading to see the Hematologist at Children's next week.

July 27 -

We arrived at Children's, checked in on the Oncology floor, a sobering experience. They retested Mady's blood {AGAIN} and then put us in a room to wait for the doctor. One of the junior doctors (no idea what her title was!) came by, and we went over Madelyn's medical history in great detail. She did a quick exam, and said "she seems great!" I wish that was comforting but it wasn't... we were still on the Oncology floor awaiting blood results. Then the doctor came in with two additional people... well the room felt like it was filling up, and I was backing up against the wall.. the Hematologist started to talk, and since I have a horrible poker face, she could tell I was freaking out. She said "I better cut to the chase, her results are ALL back to normal!" YOU ARE KIDDING ME...followed by the first deep breath I have been able to take in weeks. WOW. They aren't completely sure what caused the elevated levels, but they are 100% confident that everything is a-okay. They speculate something to do with a milk protein allergy, and all of this went down, right when we were transitioning from formula to milk, but who knows. And apparently this particular Hemotologist is a world renowned doctor, so when she granted us a clean bill of health, without so much as a recheck, we will take it. AGAIN, I couldn't be more thankful for this amazing hospital right in our backyard. The doctor said, "the parents always have an advantage seeing the patient every day. And knowing if they are acting, or feeling off." We had a hard time believing something was seriously wrong, but you certainly can't help but have many moments filled with doubt.

SO, MADELYN, THANK YOU FOR ALL THE GREY HAIRS! YOU BETTER BE AN EASY TEENAGER, AFTER WHAT YOU HAVE PUT US THROUGH IN YOUR FIRST 15.5 MONTHS!