Ally Heintz

HO HO HO! It's Santa Ally wishing everyone Happy Holidays. I hope to get a chance to write on Christmas day but things don't always go as planned.

I have some good news and bad news to report, but a lot more good than bad. On Friday I spent the day at duPont for some check up appointments. First I saw my doctor for ricketts and then I had a hearing test. My bone doctor told me it would be good to start doing weight bearing activities. Then I had a hearing test which took forever but the audiologist was very nice and she told me I had no hearing loss. When I was in the PICU I had a hearing test and they had told me I had hearing loss in my left ear.

On Saturday I was busy for Mommy, while I was sleeping I pulled out my ND feeding tube. This is supposed to mean I have to go to duPont to get a new one. However, my mommy was pretty upset and she said she refused to go to that hospital again! So, she started feeding me NG. She didn't expect this to go very well but every time she checked my residual I had nothing and I wasn't spitting up any more than what I usually do. Monday she called my doctors and they said it was great if I can tolerate being fed in my belly!

Now onto the not so good news. My mommy and daddy are pretty sad because starting January we don't have a regular night shift nurse. My nurse, Karol, is taking a position closer to her house, she normally drives over an hour to take care of me. The only nights we have covered are Mondays and Wednesdays and mommy is supposed to start working again. If any nurses out there want to, or if anyone knows anyone who does home care, please feel free to call my nursing agency and sign up for some hours! We also have no day coverage on our weekends. It is going to be a long month.

Sorry that there are no recent pictures of me, you can file your complaints with my daddy, he is the one in charge of the picture part of the website.I want to congratulate nurse Millie on becoming a grandmom and Miss Barbara, who is expecting another grandbaby. Take care everyone, only four more days till Santa!

Love Ally

P.S. I wasn't joking about the nursing thing if anyone is interested they can call my mommy at 215-234-9686 or you can call Harleysville Pediatric Home Care at 215-513-7455

Hi everyone, since my mommy's so lazy about writing updates I decided I better start writing my own updates. I got a new ND tube the other day we even talked the doctor into putting a smaller tube in. He was also nice enough to insert it a little further into my bowel so that the next time I try to pull it out it won't come out so easy. My nurse and my mommy were very happy because we were only at the hospital for one hour. Of course that meant we were home before 5 o'clock so they both had to make dinner that night!

Everything else is going well. I'm doing really well at sitting up by myself. The early intervention people have already found me an occupational and speech therapist and now they are working on finding me a physical therapist. I can't wait to start working with them. I know they will help me get stronger.

I'm also happy to say I'm doing much better with my breathing because I'm not wheezing as much. They are finally giving me some more food around this place. It is still that same yucky formula but now I am getting 19cc an hour and I think I'm doing a good job at tolerating that.

Hope all of you are doing well. I know it is a busy time of year but my daddy works with someone who has a very sick baby. So, if all of you could take the time to say a prayer for baby Carolyn and her family, I would really appreciate it!
Love and Hugs,
Ally

I know you are all probably shocked that we are finally writing an update, but I'm sure we don't have to remind you that we have been busy!

Ally has been doing well. She had her first follow up appointments at duPont last week on Nov. 30th. She made out well, we saw her pulmonary and GI doctors and then Dr. Katz (Ally's surgeon). The GI docs were very pleased with Ally's progress and said that since she was doing so well we could pull out her NG tube. So now she only has her ND tube which she gets her feeds and her medicine through. Pulmonary said that we could start to wean Ally's oxygen. So now she is only getting a quarter of a liter and before she was getting a half liter.

We have also had some fun in the past two weeks. On Sunday we all went and got a Christmas tree together. We are definitely insane!!! We will put some pictures up soon. I also was busy taking pictures of Ally in her Christmas dress!

Ally of course has also given us some hectic days. Last week on our way to the pediatrician she plugged off her trache and her nurse and I had to do an emergency trache change. When we were done with that Ally gave us a nice big smile and took a long nap. I was the one who needed a nap! Last night her pulse-ox monitor was not working. This meant we were unable to monitor Ally's heartrate and oxygenation levels. Today Ally gave us an extra special gift by pulling out her ND tube. That means tomorrow morning her nurse and I will be headed to duPont or Bryn Mawr to have a new tube placed. I'm hoping we can have it done at Bryn Mawr which would be much more convenient.

So, there it is two weeks in a nut shell! I will try not to let things go so long until the next update but I'm not making any promises. Hope everyone is well and looking forward to the holidays!