Emily's life at the clinic

Here is a look at what Emily does each time she goes to the Bone Marrow Clinic.

Once a month Emily gets IVIG which takes about 2 or more hours. This makes for a long day but Emily LOVES it because she gets to watch movies and order whatever she wants from the cafeteria.

Our highlight of the day was a visit from Karter and Malory who came for his check up too! Emily loves to play with him. She made him a valentine which he enjoyed throwing on the floor, and watching Emily pick it up for him each time...what a fun game! He is so darling! We are crossing our fingers that he will get to go home next week to St. George. Ya Hoo!

Emily's counts are great. Her white blood count is 3.9. Her absolute nutrifil count is 2.2. We are happy that she is staying very stable and very healthy!

Our only concern of course, is Emily's weight. She was 17.5 kilograms 2 weeks ago and she weighed in at 16.8 kilograms today. I have been praying that if she needs extra help for the scale to show it today. This might sound silly but unless it shows a big loss the doctors keep letting it slide even though she has been about the same for 3 months! She goes up a little, down a little all within the same range of 16.8-17.5 killograms.

The plan is to double her appetite enhancing medicine and see if it helps. If it doesn't work she will most likely be getting the "button" which is a feeding tube surgically placed in her stomach.

Next week all the doctors are getting together for a conference and they will talk about what would be best for Emily. Some like the idea of getting a pump and others aren't so sure. For me, I think it would be a great thing to actually know that she is getting nutrition into her body instead of just having Costco pizza, nachos and cucumbers.

I am very excited to have all the doctors on the same page FINALLY!! It has been very frustrating to have a different opinion each time we go in! Do you sense some frustration??? Me? NEVER! Ha ha...

I am learning that it is up to me to remind them of what issues we are dealing with. I can only imagine how hard it would be to keep up with all the patients they see and remember their history; and with us being seen every 2 weeks by someone different it makes it even harder.

For now, we are going to hope that the extra medicine will do the trick so we won't have to worry about putting the button in. No worries though. She is a very tough girl; she will handle whatever comes her way!