The last little while has been more than stressful with Brynnlee. We thought we had things figured out with her when we got the tubes put in her ears. Come to find out that was just wishful thinking. She got her tubes in August and was great until Octoberish. She has always had a hard time eating and gaining weight. We have had to always force her to eat and eat often. On top of not wanting to eat she is continually sick. We are lucky if we can keep her healthy for 6 days straight. She always seems to have something. With her bad health and not gaining weight we have been in the doctors office at least once a week if not twice. Yes, we are very well known in the office by all the staff members. Lexie knows most of them by name, she knows which ones to ask for stickers, which one will give her a juice box and where the special books are. Just to prove how often we are at the doctors office. This is a conversation I had with Lexie last Friday at the doctors office. There was a medical student doing rounds and wanted to sit in on Brynnlee's appointment. Lexie asks me "why is there a boy doctor here today"? I asnwered with "He is going to school to be a doctor". Lexie says "Well then why is he not at school?" I answered, "Well to be a doctor you have to go to a lot of school and then you have to come to the doctors office a lot and practice." Lexie then says, "Well then we should be doctors because we are here a lot!" Yes I laughed out loud.
Back to Brynnlee . . . she has never been on the growth charts (I take it back she hit 0.5% once). But the good thing was that she had her own little curve and was growing, in November she started to drop off. This is when the doctor started to worry. We tried so many different diets, feeding times, high calorie food. Nothing was working. Around Christmas time she just refused to eat. She would eat one or two bites a day. She was just miserable. When she did eat she would get diarrhea or throw up. Through all this she always had some kind of cold or flu. We started doing extensive testing in Janurary. First batch of tests was a little frustrating but a little hopeful. Everything came back negative, but her thyroid was a little low (not a problem it is normal now) and her IgA antibodies were low. Still not knowing what was going on, we were referred to a GI specialist at Primary Childrens. This was good and bad, good because we were getting some direction, bad because they were booked until April.
This is were our incredible families come in. We had been staying home for the whole month of January. We had tried not to take Brynnlee anywhere. We had been taking turns going place like church and stores. JD's parents were great to help out so we could have a break and do something together. We hadn't been down to Fairview in over a month (unheard of for me). I was at the end of my rope, when I got a text from my sister Emilee asking what she could do to help. Living far enough away that it is hard just to run over so I can going get groceries or something I had no idea. A little while later she asked if we could have a family fast for Brynnlee. I cried as I relied 'yes on Sunday'. We asked JD's family and my Dad and Louise to join also. I can't say that that day was particularly an easier day with Brynnlee but it was a lot more peaceful. The spirit was able to calm me and give me the reassurance that everything would be okay. The next week was a hard one. We were trying a new appetite stimulate which was suppose to work wonders. Brynnlee broke out in a rash from head to toe after the second time I had given it to her. Her doctor said it wasn't hives and that she most likely had fifths disease. This whole time we had been trying to keep her healthy so we could get more lab tests done. She had to be healthy for at least 4-5 days in a row to finish testing. Two weeks ago my Steve dad called and said he had talked to his neighbor about Brynnlee. His neighbor is the head pharmacist at a hospital in SLC he made some calls and gave me a number I needed to call. On my way to take Lexie to tumbling the next morning I had the number put in my phone ready to call when I got a text from JD's sister Monette (who works at Primaries). She was asking if we had been able to get into the GI doctor yet. I said no any help would be great. She called right then and said call Amy and gave me the number. Funny thing is that both numbers were the same! I called and set up the appointment for the next Tuesday. Just to be clear, this is next to impossible. It takes on average 2-3 months to get an appointment. We got in in a week. The Lord does answer prayers and yes I did cry the whole way to tumbling. I called Brynnlee's doctor to tell her and she almost died saying there was no way we had an appointment that soon.
Last Friday we were able to take Brynnlee in for more testing (she had been healthy for 5 days)! On Tuesday we took her down to Primaries for her GI appointment. We still don't have any answers but we do have many things to try. She is getting a scope done on February 23rd (yet another miracle, they are booked out until the end of March)! The doctors think something is going on with her immune system and maybe that is affecting her GI tract and appetite. They gave us a bunch of scenarios of possible things she could have. But we won't know anything until after the scope. They will run some more tests to see if we need to see an immunologist. They gave me a strict feeding schedule for her and some different tricks to try. We are trying an appetite stimulate again. Right now I feel really good about things. Today she is healthy and has eaten twice today (twice means a couple bites two times today which is great).
Through all of this I have learned I have one strong and stubborn daughter (coming from JD and I, I have no idea were she got that). She has been sick most her life, yet she still had learned to smile and laugh. Lexie is a great older sister and a second mommy to Brynnlee. I have an amazing husband who knows when I need a break. I know that the Lord hears and answers prayers. I believe in the power of fasting. I know that relying on the Lord is the only way to get through hard times.
