Chapter Six: A Year!

Well, It has been a summer jam packed with tons of stuff! Now here we are, middle of September and I’m feeling overwhelmed with things to remember! For example, my 2 year old just pulled his diaper off and went potty on the “big ‘oy potty” (twice) out of his own free will. That is a Fall miracle if we’ve ever had one! However, he is back in diapers this evening because the excitement wore off and (call me crazy) I do NOT want to start that battle just yet!

Before our Canada trip we had a load of tests done for Indie -to give us some peace of mind. It was really a nice month and a half break of no appointments. We kind of got used to giving her the medicine and just living a normal life!  My mom came back with us and it was nice to have her help to adjust back into life with the kids but we also had fun! As a family, we participated in a world wide scavenger hunt that was based around doing service projects and promoting healthy living in a fun way! We had a BLAST!!!!! We also met up with LOTS of friends from Singapore and family that my mom hasn't seen in a long time. It was a really great month and a half!

(Now lets take a second to reminisce about the time we had....aww...we miss the cousins!)

  

Alright-back to business! 

Indie had an ultra sound which was just a regular check up and to our dismay, they found that the bacteria has not grown, but has changed shape which means it’s still a live bacteria. Our meeting with the surgeon was not a happy meeting. He said that we will continue to try alternatives but he believes that it will ultimately result in removing her spleen. Not great news. On top of that, our 2-year-old son has a swollen lymph node in his neck (he's had it since he was 3 months old). The surgeon is confident that his lymph node will also need to be surgically removed to test that it isn’t the same bacteria that Indie has.

Funny how the initial feelings all come flooding back. (I’m pretty sure they will continue to come back every so often).

I felt like things were looking up and it was all over, now it’s starting from the beginning with another child and Indie isn’t making progress? (Insert muffled scream sound here).  We then had our infectious disease specialist call for an immediate meeting that the secretary couldn’t tell us about over the phone. It’s hard not to work yourself up just a little bit when you have a week to think about all the possibilities! In the week before the appointment our 2 year old had had night sweats so bad his fingers were pruney and had thrown up twice-which are the first signs of this bacteria. So that wasn’t good.

It just so happened that the day we were scheduled to go in was Indie’s FIRST DAY OF PRESCHOOL. (Which by the way she didn’t make it to because her appointment went longer than expected and her brother puked in the car during the commute, so we called it a wash. Poor thing had to wait an extra 4 days to start-but we did get a couple rounds of "first day" pictures!).

  

The doctor was sweet and luckily the news wasn’t too intense, they just wanted us in right away for a check up. Indie’s medicine was not working the way they wanted so they doubled the dose. It’s a lot for a little girl to take. The dose is for a much larger kid, but we think it's better than the alternatives. We will do all the blood work again this month to see if the new dose is working.  She also said that Our son’s lymph node appears inflamed but shouldn't be anything to worry about right now. We will give it some time to see if it goes away. The 'waiting' part is hard for me. Obviously I don’t want him to have surgery and I don’t want to go through this all again with another child-but he has had this lump for 2 years-under the current symptoms and circumstances (and the high likelihood of there being a genetic connection), I'd really like to know what it is! 

This is where I have the hardest time. Leaving everything to the research and waiting to see if more symptoms follow. Oy, oy, oy. It is tough waiting for something to happen.

After starting the new dose of meds, Indie had some rough days. Throwing up, ugly upset tummy sorts of things but they have pretty much stopped now. It is hard to know if it is related to medicine or if it is just because she is susceptible to colds and other little bugs. The residue on her teeth continues to creep in but her dentist is awesome and scrapes them clean regularly. Her tongue has turned an orangy-deep redish color but those are the most noticeable changes. She has definitely been more grumpy lately. It is kind of embarrassing for me (I know all kids have their days, but it's hard when your kid is having a LOT of 'days' and you're not really sure why!). Aside of that, she is still an active little thing. By all accounts it still seems totally abnormal for her to be reacting so well! 

 

     

So here we are. A year since we first noticed the lump - Just before her third birthday. The future was really uncertain for a while but we find ourselves getting used to the waiting rooms, appointments, navigating pharmacies and insurance claims, a new and improved diet, knowing doctors on a first name basis, and having a routine treat at the hospital cafeteria. (She really likes the gourmet gummy bears!.....As does her mommy!) Here we are going to celebrate her 4^th Birthday soon. Looking back, life was totally altered for us, a whirlwind that brought a whole new dimension to our lives. 

We are so grateful to have 3 beautiful kids that get along and love each other. It has been a huge blessing for us to have their unique personalities in our home and blending as well as they do. Our sweet baby has brought such a calm to our family. Although there was a lot going on when she arrived, she couldn't have come at a more perfect time! Even though there are still stressful days, there is an underlying peace that keeps us hopeful that progress is on the horizon and this is just a season for our family.