Pray for healing in Asher's kidney's and ureters!!!
We are also having a bit of difficulty with feeding Asher. Since my breastmilk production is only about half of what it needs to be, I was supplimenting with stored breastmilk from my deep freezer, which has since rut out. I am looking to begin making formula for Asher as I personally know of two children who have used this and they are perfectly strong and healthy boys. The recipe calls for a number of suppliments which need to be ordered and that takes time. So, in the mean time I had to suppliment with something and purchased some organic formula. Well, his little body did not like the powdered forumula at all and he began throwing up.....or trying to throw up since his nissen doesn't allow him to do so. We freaked out, not knowing what was wrong with him, and took him to the ER where he then proceeded to act like normal and made us feel really silly for taking up an observation room. I'm not usually that jumpy but with Asher's condition, you can't be too safe. So, from my perspective, anything that makes my child try to throw up that violently isn't good for him to be eating. So, we put the word out to all of our friends with new babies asking for any spare milk they had....and we have received a nice little bit...probably enough for a week or so of supplimentation. HUGE BLESSING!!!! While we have that to help feed him, I'm trying to see if he is sensitive to goat's milk and if he isn't, then I'm going to order the ingredients needed to make the formula and see if he can take that. I know I can't always count on wonderful mommy's to donate their milk and I need to find another solution pretty soon. My primary hope is that he would be able to nurse soon and could bring my milk back up that way. I have a suspicion though that my milk supply is dwindling because my body is just plain worn out. I'm over tired, over stressed and don't eat well as of late due to the before mentioned things. Put all that together and I don't see much milk being made.
Now, there are some bright points in this seemingly cloudy day. I just called the neurologist today to ask about Asher's EEG results of 3 weeks ago (hated having to wait that long for an answer) and it came back clear of seizure activity. So, we are beginning to ween him off of the phenobarbitol. It will take us 5-6 weeks to ween him off and then another 2 weeks for it to be completely out of his system so that's another 2 months and then hopefully he will be free. The urologist wants me to take him off of the amoxacillin (antibiotic), THANK GOD!!! I have been pushing for the to take him off of that stuff for over 2 months now. Apparently the urologist is the only doctor who sees the cause and effect relationship between using routine antibiotics and encountering super infections from antibiotic resistant bacteria. He said that if Asher is to get an infection, he would rather it is from a bacteria that they can treat with antibiotics. So, with that med gone he is just on the Phenobarbitol (which is being weened) and the Calcitriol, a Vit D suppliment used to regulate his calcium. Thank God he is coming off the meds!!!!
We are still seeing an occupational therapist for his pinky finger. It is starting to straighten out a little bit more which is good. I need to remember to put his splint on more than I do. He is also seeing a speech therapist who is working with his oral motor skills to help him eat better. Right now he is taking 1 ounce by mouth 1-3 times a day, depending on my hectic schedule (can you believe I had to take him to 5 different appointments last week alone!!!) He loves his bottles and I can't wait for him to get his full feeds that way.
Well...it is so late and I need to get some sleep. Sorry again for the delay in updates but I was overwhelmed with life's happenings and didn't want to write about them ;)
Aside from all of that, he is doing very well. Growing and rolling over. ...playing with toys and vocalizing. He is finally growing some hair, it's just blond and doesnt show up too well ;)