Constipation is not fun

It has been almost 6 days since Bella has had a bowel movement. We were giving her half a glycerin suppository once a daywith no result. We also would stimulate her by using a rectal thermomenter but still no good result. I finally could not let her go any longer without having a bowel movement so after talking ot Brandon about it we decided to make her an immediate appointment to the pediatrician to either get her a fleet enema or some laxatives. The Pediatrician felt her belly and sure enough he felt a very hard stool stuck in her. He prescribed her Miralax for her constipation and asked that we give her double the recommended dosage just the first time to help her out then give her the regular dosage once a day everyday to keep her regular. My inly concern with Miralax was that its just a laxative; its not a stool softner so her poop was going to be forced out whole. That was going to be so painful for Bella so I knew I was going to have to research another option.

He also listened to my concern about the Minnie Button infection. I am completly happy with the results that the antibiotic Bactrim has had but I wanted a topical cream to help fight any potential fungus infection on the surface of the skin. He prescribed Nystatin which is a powder that you can rub on the infected sight it it looks red or irritated. Finally, I had a way to fight the infection from both the inside and out. Hopefully noe, i can get rid of this infection for good.

The Pediatrician brought up a shot called the RSV shot. The RSV shot (Respiratory Syncytial Virus shot) is given to babies once a month who are at high risk for severe RSV. Because lung infection is the leading cause of death to SMA children it is important for us to consider any medication that can help prevent symptoms before they start. Im glad the Pediatrician told us about this shot because I had never read anything about it. Its one more weapon is our pocket to help fight SMA! Im planning on bringing it up to Bella's Pulmonologist at our next appointment which is in 2 weeks :)

The very next day we had another appountment but this time with the GI doctor. They looked her Minnie Button and said it looked great. She had a small granuloma beginning to grow under the Minnie Button but they werent conserned. They said its so small that it isnt even an issue. If it gets bogger and begins to obstruct the Minnie Button, the doctor said they can burn it off. Kinda scary but Im glad there is something they can do about it.

I brough tup to them that I believed her constipation was caused by her formula. She was prescribed Elecare when we were discharged and for whatever reason the order was never placed with our provider. I had her on Neocate in the mean time and her consitipation just worsened. Not only does the Neocate and Elecare cause constipation but it doesnt not help her sweating at all and this has become a new issue for me. The GI doctor asked which formula would work best and I explained that the Amino Acid diet was very important for SMA babies and that Vivonex is what almost every baby with SMA uses. She spoke with the dietician and of course she said no. Vivinex is primarily used for children over 2 blah blah blah. They are not experts on SMA nor do they have all the information that I do so it irritated me that they just shot my opinions down so quickly. Im planning on calling the dietician myself and raising hell because its necessary for Bellas care to to first class. Not because I want the best of the best, but because her conditions requires it.

The GI doctor also decided that Miralax wasnt the best option for Bella because it wont soften her stool. She prescribed Milk of Magnesia (a stool softener) at 5mls 3xDay for 2 days. Then 3-4 mls once daily to keep her regular. Once Bella is back to normal and stooling once day without straining, than we can switch her back to Miralax. She explained that Milk of Magnesia will give Bella diarrhea which is what she needs to clean her out, but diarrhea os a bad thing when its not necessary. That is why we will put her back on Miralax after she's nice and emptied. lol

The GI finally placed the order for Elecare and we should be recieving it in a few days. In the mean time, she gave me three cans and I started Bella back on Elecare this afternoon. Hopefully, when I get a hold of the dietician I can get her on Vivonex and put this mountain behind me.

Bella's weight has been increasing at what her GI doctor says is a perfect rate :) She is exactly where she should be weighting in at 13.7lbs and measuring 25.5 inches! I makes me feel good that all our efforts, both her doctors and mine, are paying off!

And for some great news...Bella got accepted as a candidate for the Valproic Acid/Carnitine cliniccal trial at the University of Utah. Valproic acid with carnitine has been shown to stimulate the SMN gene that produced the protein necessary to help with motor function. It is only a therapy, not a cure. It will stop or at least slow down the progression of the disease buying us time to get the Stem Cell Therapies going and has even shown to increase strength in some candidates! I still have to fill out the Parent Consent form and email it back to the University but I don't see a problem with us participating. My dad has alrready volunteered to drive Bella and I so all the money raised buy the car wash and the Astro Burger fundraiser will go directly to that trip! We are making it happen guys! God is happy to see us working so hard and therefore he is providing! GOD IS GOOD!!!!!!

Oh yeah, I know many of you have been texting me and emailing me asking how the Astro Burger fundraiser went. It went GREAT!! We made $2,000 and left a lasting impression on many peoples hearts :) Katie Andrianos's (fundraiser coordinator) uncle knows many politicians and has expressed his willingness to help! He wants to know what kind of funding SMA research needs and what it will be used for and with that information he will do anything and everything he can to raise that money! Im on a hunt to find any and all money starved trials and research that is going on to help cure SMA so that he can get a good picture as to what they money will be used for. People have been surprising me left and right with there generosity and persistance!

This pretty much sums up the last 2 days of our SMA fight. Everyday brings a new battle and a new reason to keep going :)

God Bless,
Bren