Nayanna Arts

It’s been a while. SO many things to keep me away from the computer and more recently some very sad news. From the beginning, well, morning sickness, or all day acid reflux had me feeling like I was going to throw up any minute. Thankfully at my last DA, my Doc prescribed some Zantac, so I’m feeling like a human being again. That and the heat wave “seems” to be over. Man, we truly reached record highs up here. I’ve NEVER seen 100’s here and well, with the heat index, it seems we had them! Sucky weather to say the least. I don’t mind summer, just give me some nice 20’s and a sweet fresh breeze and that for me is summer paradise. If I want crushing heat, I’ll go south

Yeah, I’m sorta stalling here. The sad news is quite sad but it’s not too bad. That’s how my daughter’s pediatrician talk of it. Yes, it involves my sweet sweet little girl. She was diagnose Wednesday with Celiac Disease. I’m SO SO sad for her. A life time of struggle to eat gluten free awaits her. The diagnosis comes from months of haggling her Doctor and my mom being on my case that something is just not right with her. She stopped growing. Absolutely STOPPED growing at 15 months of age. She still wears size 12 mo pants but had this huge distended tummy where we had to buy 24 mo clothes to fit her!!! Most of the clothes would fall off her tiny shoulders and still be tight around the tummy. After comparing photos with some friend’s toddlers I came to realise that something was just off. Her belly was more than just the “toddler belly” no matter what anyone said. It would be normal sized at breakfast and be HUGE by bath time. So, I brought it up again to her Dr and had beforehand made some Internet searches and the only things that came up we’re constipation and Celiac. So we started by giving her some gentle laxatives to see if they would help, because her tummy was indeed full of “shit”. (This being seen at an U/S she had in June). Her Doc, after thinking things through and me reminding her of her growth and weight gain problems called back saying that we should go ahead and do some screening blood tests so that when she comes back for her follow-up, we’d already have the results.

So the follow-up visit was this Monday. The blood results we’re STILL not in. So, after talking about the fact that the laxative had small effects (her tummy DID shrink a bit) and then reminding her yet again about her failed growth and weight gain, she took the time to measure her. Which revealed that she had indeed not grown and fraction of an inch or took and once of weight since her 18 mo check up. (I had been tracking her growth since 15 mo and had the same results.)

Now before you all go and bitch against her fabulous Doc, I must defend er by saying that first of all, she cannot be expected to remember every detail of every case load she has AND these past weeks there have been a BOOM of births and she had 10-11 births in as many days, often not sleeping at all for over 24 hours. SO, all this put together, it’s no wonder she forgot silly details like my girl’s growth chart.

SO, when she saw put her measurements to her growth chart and saw the results she nearly jumped out of the office to get Évelyne in to see the clinic’s Pediatrician before she went on vacation. This brings us to our Wednesday appt.

The results are STILL not in when we start the appt, but they get in shortly thereafter, except for the gluten test. So we wait, talk take the family history and she notes the other mineral and vitamins results. Then the results come in. Her face was grave and she started with: Well, it’s not good news, but it’s not bad either. She has Celiac….

The good news part… if the test had been negative for Celiac, the next step was for Cystic Fibrosis. NOT GOOD. So this was still good news hiding as bad news. The next step was getting a referral to the gastroenterologist. Faxes we’re faxed and we should have a phone call from the hospital very soon.

Is that same afternoon soon enough? Yikes! I was still reeling from all this information, trying to inform myself and stay strong for my little 22 mo old daughter that is simply unaware of all that will be happening to her. So after passing up (stupidly I might add) a first appt for Aug 29th because we would be out of town on vacation (something I didn’t think at the time, but could have canceled the trip!!), the receptionist puts me on hold before I speak up and comes back with Sept 21st. I agree, a little shaken and hang up. Thinking on it, I realise my error and that it’s really too far. I call my mom to back up my thought process and then call the appt office to see if I can still get the Aug appt. Sadly, it has already been filled. I guess the lady caught something in my voice and said that if we’re interested, she can write a note for us to be called if there are any cancellations. I agree and hang up. Then spend the rest of the day worrying about my mistake.

The next morning, I call our Doc’s office and ask to talk with the Ped. She’s out of the office until next Tuesday. I start to despair. The secretary knowing of Évelyne’s situation said that she’ll write up a note to tell the Ped as soon as she sees her to call the specialist’s office to try and get her an earlier appt. Hang up still not feeling relieved.

Finally, noon rolls around and the hospital calls!! They have a cancellation, for 1pm!!! That’s less than an hour away at this point and I’ve no car at home!! What to do! Figure things out after calling my husband and call a cab. Need to stop at the clinic to pick up the referral for the gastroenterologist and then head to my husband’s work to pick up the car. We get to the hospital JUST in time for the appt! WAHOO!

The rest is clearly great news. The Specialist said she was a TEXTBOOK case, but that we still needed to have a biopsy done since that is the only 100% sure way to diagnose the condition here. The only problem is that the first available appts for the anesthesiologist aren’t until NOVEMBER!! Children must go under full anaesthesiology. He said that we could always simply admit her to the hospital and then put her on the emergency list. We go home with all this new information and hope that we will have news soon. Not 10 minutes home do I find that we already have a message on our voice mail. It’s the specialist nurse calling because someone has canceled their procedure appt and we can stick Évelyne in that appt slot!! I’m ecstatic!!! I call back and accept!!!

Évelyne will undergo her biopsy next Wednesday and will likely start he new Gluten free diet shortly thereafter.

This has been a LONG post and kudos to anyone for reading it!

This entry was posted Friday, August 4th, 2006 at 9:41 AM and is filed under Celiacs, Photo. You can leave a response, or trackback from your own site.