Trying to Eat? Originally Posted January 14, 2010

Not much new to report today. All of Ali’s metabolic tests and her GI scans from this week were normal.

We have talked with the pediatricians about trying to push Ali a bit in terms of her tube feeds. She is not getting nearly enough nutrition so we need to increase the volume of her feeds to get her the calories that she needs to grow (Ali has not grown in length since birth and is still under her birth weight). We also need to condense her feeds because she is pretty much feeding continuously right now and eating all the time may be affecting her desire to bottle feed because she is always full. In short we need to feed her more food in less time. We have attempted to do this before and she didn’t tolerate it well but hopefully as the Digoxin leaves her system, her ability to tolerate food will increase.

We have been trying to give her a small bottle (5 ml) every three hours and will continue to do that. If she learns to bottle feed then we don’t have to worry about her tolerating her tube feeds. She is not really able to suck or swallow effectively yet so we will continue to attempt to bottle feed her and hopefully soon she will learn to bottle effectively.

Ali went into SVT this morning which is a good indication that the Digoxin is leaving her system. The SVT was short and she remained stable throughout the episode so no worries! We may have to look at putting her on a different class of heart medications before she is discharged from the hospital. Her cardiologist is consulting with some cardiologists in Boston about her episodes of SVT because the appear atypical in some ways. We’ll be waiting a few days to decide if we need to medicate her or not.

Today, Ali had her first bath!

Moving Forward. Originally Posted January 13, 2010

Sorry for being so late starting this page for Ali but there’s been a lot going on. She has now been in the hospital for over three weeks so I guess it’s time to get started on a web page for her!

This week has had many ups and downs. Ali is still not tolerating her tube feeds very well but we have made the decision to attempt to increase the volume of her feed very slightly anyways because she hasn’t grown since she was born (in length or mass). Not growing could affect her neurological development so it’s crucial that we make some changes to ensure that she is getting proper nutrition. The other option would be to increase the calorie value of her formula but that hasn’t been overly successful in the past. Today she seems a little uncomfortable on the increased volume of the feed but so far she’s kept it all down.

Yesterday the decision was made to discontinue Ali’s Digoxin. This is the medication that she was overdosed on earlier in our time here.   This overdose left her very ill and thanks to this medication we went through what was absolutely the most terrifying experience of our lives.  Once the medication left her system initially, it was restarted but unfortunately even on a very conservative dose, the concentration of Dig in her blood stream got really high again. We (Jason and I and the pediatrician) felt that she was going downhill again on this medication so after consulting with the cardiology team we all agreed to take her off the med and leave her without cardiac medication and just see how her heart reacts. We will probably be looking at a new medication for her next week but for now she is in a safe place and if she goes into SVT there are trained professionals around to intervene if necessary so we’re comfortable seeing how things go without so many meds in her system.

We have been attempting to give her bottles. She hasn’t been overly successful yet. Her ability to swallow seems to have been slow to develop which is why she is primarly tube fed. Sometimes she is able to take in 5-10 ml of formula by bottle and at other times she chokes or gags. It’s going to be a slow process but it’s my hope that eventually she’ll learn to bottle feed.

We are very hopeful that once the dig clears her system she will begin to improve in all areas. Jason and I feel very strongly that after being OD’ed on Dig, it is not a medication that is good for Ali and we’re very happy that she’s not taking it anymore.

This morning Ali went for a “Gastric Emptying Scan”, no results yet. There were also some metabolic tests done and we are awaiting those results as well!

I will update again as soon as I have the chance to!


Introducing Life With Bobean!

Thanks for stopping by and welcome to my new blog!  Life with Bobean is a blog about life with a very special little girl.  I’ve been blogging about Ali and our family for more then four years and  now, I plan to move the content from my other blog over to this more public blog in order to share Ali’s journey with more people.  This blog will hopefully provide some insight into what it’s like as a family to live with a rare syndrome and also raise awareness for my daugher and all the other amazing people living with Costello Syndrome.  This will be a amazing journey for me as I sort through blog posts from right after Ali was born until very recently and repost them here to share her amazing journey!  Please enjoy reading about our amazing little Bobean!!!!

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.