Insurance woes

So I am calling the insurance company again about Ian's meds being covered or rather not being covered. I'm getting experienced at the menu prompts and think I can do it in my sleep. Oh for the red tape!

Ian is doing well otherwise. He will have labs in about a week so I'll have more to update then. He got his flu shot recently as did the rest of the family less his little sister.

We've had some comments about his skin tone recently that make my claws want to come out but I am trying to be civil about it. We worry about him being teased in school if he still hasn't had his transplant by that point. What is a parent to do?

We are especially mindful and express gratitude at this Thanksgiving Season to everyone who helped in anyway with Ian's fundraising campaign. It is a huge relief to us to know those funds are there to help our little boy. Thank you, all!

Waiting to swallow a pill.....

Ian had labs just after I came home from the hospital with our little girl, Livia Janene. He did a great job keeping the trend and went to get some french toast with Dad afterwards as a special treat. He loves French Toast and just to let everyone know...Waffle House does not have French Toast on their menu. Shocking we know and learned it the hard way.

Ian's lab values have fluctuated a bit, which is normal. His PELD is up just a bit but not too much. He'll need labs again at the beginning of November. He continues to be stable for which we are so grateful for.

We have a specialist visit in November at MUSC and then head to the CHOA transplant center for a clinic visit in December getting so see the beloved Dr. Romero.

While I've been somewhat out of commission healing from my c-section, Brett has taken on the medication dosing, etc. and has done a great job. He even reordered meds that were running low. I've been the one to do almost all the dosing, ordering, mixing, etc. and it was interesting trying to teach my mom how to use hte syringes, etc. as our backup medication person. I never realized that syringe technique is an art almost. I've just started on the medication tasks again for Ian and it has been nice to have a break. Oh for the days when Ian can swallow a pill!

CHOA Visit

Ian was a champ at our CHOA clinic visit. He chose his arm for labs and didn't cry or wimper or anything. He had extra blood drawn this time as he needed vitamin levels tested. Dr. Romero again was Ian's hero and I think Ian would do anything he asked of him. He got more stickers than he needed as usual--I think we are growing quite the collection.

As usual we were not lucky enough to find a wagon to transport Ian from parking garage to 6th floor clinic area through the maze of cafeteria, etc. so we did our usual "race"to help him along. Brett and I joke that we will be able to get a wagon when Ian is 6 or so and doesn't need the help. We stopped for frozen yogurt (ice cream to Ian as we don't want him thinking that yogurt alaways is like ice cream since it is staple on his high protein diet) on the way after clinic as Ian's reward. It may become routine now. He loved it!

New Specialist

Ian's new specialist was great. The visit was a success to everyone but Ian was thrilled because in the waiting room there was a TRAIN TABLE. Score one for Dr. Pillai immediately! Ian loved it and was a great patient that day. He had to wear a cute blue hospital gown for this first visit which was more comprehensive than future visits will be. He weighed almost 35 pounds and is 37 inches tall. Growing like a champ!

We head to Atlanta for a transplant clinic visit in 1.5 weeks and I'm sure talk of Dr. Romero and the butterfly hosptial will pick up.

PELD is a 12....

So Ian's PELD is a 12. It is labor day weekend. Holidays always make me nervous as they are big transplant times--more people travel=more accidents=more donor organs. I never thought of it that way until our coordinator told us.

This time of year (in about 2 days) will mark the three year anniversary of Ian's liver disease diagnosis. I will NEVER forget the phone call telling us to go to the ER immediately, etc. I will NEVER forget just breaking down and crying helplessly with Brett in the hospital bridge after the offical diagnosis and outlook was described to us. That day has been the absolute lowest of all my days and I hope I never have to relive anything like it and never would wish anything like that on anyone.

Ian continues to grow and develop wonderfully. He is into Thomas the Train right now and just earned Herold the Helicopter for making good choices for a week. He is working on earning another engine, likely Henry, for another week of good choices.

We meet with our new specialist on Tuesday and hope that he is as caring and concerned about Ian as our former specialist, Dr. Cordle in Roanoke. We have been really blessed with a great medical team that help Ian to be so stable.

Ian's Update

So this blog is planned to be all about Ian and his health updates. Ian is currently awaiting liver transplant as he has biliary atresia. He is doing so well and continues to defy the odds. We have been waiting since November of 2005 at this point. The transplant team at CHOA have joked with us asking if he has had a secret transplant that they don't know about.

Ian had labs today and was an absolute champ! He held out his arm, didn't flinch or even cry during hte whole thing. It was the first time we had them done here in South Carolina and we went to MUSC at the pediatric laboratory. We will find out results soon.

He is still on seven medications which is down from previous numbers so we are thrilled. He is able to take a chewable multivitamin now. We recently changed the formulation of one of his meds and that is not going so well--I'm hiding it in his yogurt now and it is better. What would I do without yogurt. He now gets all but 2 meds in morning yogurt. Yogurt is loaded with protein and has good calories behind it. We go through about 3 jumbo tubs (with just ian eating it) a week.

Ian is potty trained now and likes to sport his Thomas the Train undies. He got a train table as his big potty training reward :) His favorite engine changes around but usuals in the listing are Thomas, Gordon, Toby and Percy. He likes to quote lines from the two Thomas DVDs that we have and is very excited if the library has a new one for us to check out.

Ian will be a big brother in about 8 weeks and is my helper getting hte nursery ready. He has discovered his old baby toys and books and is actually playing with them for extended periods of time while I sort clothes, etc. He is a great helper.

Someone today in Publix stopped me and asked if Ian was juandiced and I replied that he was and was awaiting a liver transplant. This was the first inquiry in South Carolina. I had lots of that in Virginia when he was just a small baby asking me if he wore make-up, why he was so yellow, etc. It always amazes me what people will ask or say and has really taught me to be much more aware of issues.

We head to CHOA in September to the wonderful land of "the butterfly hospital". Ian loves the butterfly decor in CHOA and is especially fond of Dr. Romero there, the head pediatric gastroenterologist. Dr. Romero is wonderful--caring and on top of Ian's health needs.

My goal is to try to update this page bi-weekly at least so check back often with the latest news on Ian.