Tuesday, August 30, 2011

Hurricanes and Whirlwinds

I feel as though it has been a whirlwind of a few days between worry about Colin and then about the approaching hurricane. We have been all over New England in the past few days (which we did enjoy), have squeezed in some doctor visits, Chris has worked two jobs with long hours, and we are getting ready for our new routine to begin again in a few days.

- whew -

We. are. exhausted.

Needless to say, THIS little guy gave us quite a scare this past weekend!
A couple of weeks ago, Colin had routine blood work done to check his thyroid levels so Dr. Uma (pediatrician), also threw in a script for a CBC (blood count) which we do every so often to make sure everything is where it should be. Unfortunately, which turned out to be fortunately, the results all went to the endocrinologist instead of to each respective doctor, so the endocrinologist called us last week to tell us she was very concerned about the levels of the different cells in Colin's body.

However, she started the conversation out by telling us that everything was looking good with his thyroid, but she was very concerned about the results she got back on the CBC. She said "I'm not sure if you are aware, but there is an increased risk for children with Down Syndrome to develop leukemia".

- Heart stops -

She continues on to tell me that his red blood cell and white blood cell counts were very low. She showed the results to the hematologist in the group who suggested we make an appointment to come in. I made a very panicked phone call to Dr. Uma's cell phone and after checking on the results, said that because his platelet count was ok, there wasn't a reason to panic but did suggest we see the hematologist (who actually called us to schedule the appointment).

We got in on Monday morning (amazing how fast you can get specialist appointments when there is a serious concern). The doctor was great, explained everything in layman's terms, and did repeat blood work because he felt that he could get better results that what a labcorp type place could get. He said that even if these were the earliest signs of leukemia, there really wasn't anything we could do but wait. However, he was pretty confident that Colin was ok.

We got a call today saying that the white blood cell count was back to normal (could have been low to different types of immune responses like teething, virus, cold, etc.) but his red blood cell count is extremely low. So, we had two options: liquid supplement or make sure Colin gets foods rich in iron.

Right. I'll go with option #2 please! So, we are relieved to have our prayers answered because the prospect was very scary. We need to continue to monitor his results in the future and check back in if need be.

Our other worry is that the feeding problems have taken a dramatic turn for the worse and now Colin is pretty much refusing all foods except for ice cream, pudding, and yogurt, and eggs. As in, will. not. eat. He screams, he cries and will not let you put anything else (like pancakes, cottage cheese, pastina, etc.) into his mouth.

I literally was in tears and near breakdown today because it was the second day in a row of the worst possible scenario, so I picked up the whole chair, carried him into the family room, and turned on TV. Guess what, he ate.

I never wanted that to be an option, but it has to be right now.

He has to eat. What else am I supposed to do? I partially and honestly think it's me because I think he knows I am frustrated (I worry about weight, nutrition, etc.) and is doing all of this on purpose. He doesn't do this to daddy at breakfast. He didn't do it to my parents when we stayed there this weekend.

I just don't know what to do and to be quite frank? I want to throw in the towel on this whole feeding thing...but I can't, because he must eat.

Dinner last night? Pudding and ice cream. Dinner tonight? Ice cream. Great. Fantastic. Super.

Because of all of our stress with Colin, and the stress related to the upcoming hurricane (we live 5 miles from the beach), Chris and I decided to change around our family vacation plans and head up to Boston anyway sans kids. We dropped them off on our way to Boston with my parents (they live on the way), spent one night out alone, made it to 5 innings of the game and then left to get back on Saturday before the hurricane actually hit.

We were adventuresome for a change instead of taking the conservative route and enjoyed some de-stressing together. At the game we celebrated 8 years together from the day we went on our first date to now...

We made it back to my parents before it even started raining in North Jersey, and hunkered down for the brunt of the storm. We did a lot of playing and relaxing...

...and although I didn't sleep a wink, got through unscathed without any damage to mine or my parent's house. We were so lucky.

Other than that, we have been riding out the end of summer just enjoying each other before we are back in our routine...

Kailey is growing like a weed and I truly enjoy watching her and how curious she is about everything. Things are different with her; not necessarily good or bad, but different and it makes for an enjoyable ride because we see things in a different light. We wouldn't make any ride any different...

We have been trying cereal with her again and she is started to get the hang of the whole eating food thing...

We had one last playdate today before school starts with our buddy Logan and his Mom Teresa and brother Ryan. We are lucky that they live so close to us and had so much fun today! Colin gets around the park one of two ways...


..and #2. Needless to say, his knees are black. We are patient, but also can't wait until he is walking!

Afterwards, we made an impromptu trip for dinner to Ihop and despite the fact we had 4 kids there, they were all very good (well, except for the fact Colin wouldn't eat anything but ice cream). I enjoy watching the boys grow and change together because although they share a similar diagnosis, they are also so different personality wise, which is great!

Our attempt at getting all of the kids together, but I don't think any of them were looking. Ryan and Colin were saying cheese to each other!

We had a lot of fun and can't wait to do it again! If you could, please say a prayer for Logan as he is going in for surgery at CHOP on Friday to have his tonsils and adenoids out. We know you will do great Logan!


Team Carter said...

So glad you are OK from the hurricane...I was worried about you guys! I'm so glad that you got away for a bit of destressing. I loved this update, and I can't believe how big your baby has gotten. Much love and prayers!

Natalia said...

Praying for Logan and sending out LOTS of positive energy and love!

I will also be thinking of Colin and hoping that everything from feeding struggles to his red blood cell count improve quickly. I know he's going to get through it all. He's such a strong little guy! :)

LOVE YOU! xoxo

Deanna said...

Wow, I had no idea that you were facing the leukemia thing this weekend! I took Addison in a week or two ago to get her blood levels checked and I got a call a few days later saying that her blood had clotted in the lab before they got a chance to check it. Needless to say, I was super ticked and haven't had the energy to take her down there and have her body drained of blood through her finger AGAIN so close to the last time. )-:
Glad everything is OK with sweet Colin, and glad that you all stayed safe during the big storm!

Becca said...

WOW! What an update! I'm so glad Colin's bloodwork came back better the 2nd time around. Leukemia was *always* in the back of my mind for Sammi's first few years, and I'd wait on pins and needles to get her blood results. She's a little bit deficient in iron, too, which kind of stinks because she also has issues with constipation. So vitamin supplements it is. LOL

Glad you and your family were all safe during the hurricane, and that you still had a good trip up north!

Jenny said...

What a scare!! I'm so glad Colins blood work was ok in the end. I get nervous every time our Doctors want to recheck something that looks a little off. Sorry you are struggling with the feeding issues, I had to laugh when I read Colin would eat in front of the TV though...He's such a man! lol...And for now feed him whatever he will eat! You have to do what you have to do :)

The Paskins Family said...

Hey Kelli,
Nate is still struggling with eating too, but one thing that has at least taken the pressure off of me nutritionally is to feed him smoothies. He eats smoothies for the bulk of his calories and any other feeding is just for eating practice (we shoot for 10-20 bites of something - still on very smooth like yogurt, ice cream, applesauce). I cram the smoothie with all sorts of stuff...our usual in a big blender to last the day is: 1 avocado, 1.5 bananas, frozen spinach, frozen mango, blueberries, rice cereal (for the iron), unfiltered apple juice, yogurt. Sometimes I'll switch out different fruits or throw in a nut butter...
Hope this helps!
Hang in there - I totally know how you feel - it's SO hard!

Anonymous said...

Hi Kelli, My daughter has DS and just turned 2. She is a super picky eater. She can eat solid food like a champ, but loves yogurt, oatmeal and all things baby food. The only solid food I can get in her without question is strawberries. No idea why. It frustrates me to no end, but when it happens I decided to just not fight it. She also has type 1 diabetes, so - like you said - not eating isn't an option. We've also had a similar CBC scare. One idea (and you may already know this) is Yo Toddler's apple yogurt. I love it because it has 25% of your daily protein requirement in one carton and is chock full of iron. Might be an option for Colin. Just wanted to offer it up. Colin and Kaily are cuties!

Nana said...

God has blessed us once again and will be watching over Logan! You have 2 beautiful and happy children!(Of course I'm a little prejudice) Love, Nana

Anonymous said...

Hey Kelli,
what a shocking weekend for you guys! thinking of you
viv - Owens mum