Recently we took a semi secretly preplanned and semi impromptu trip to Watseka. Traveling long distances with a baby like Asher has always been kind of hellish. We haven't done it much unless entirely necessary, and then cold and flu season hit and we haven't been able to even though we've wanted to. We were planning to go there for Thanksgiving but we were all sick for over a MONTH. We were planning to go there just after Christmas, but my Grams got sick and then Asher got sick again. Due to extreme diligence on my part, I have kept Asher well for a good stretch now, so we figured now was as good a time as any because he could get sick at any time! We, along with my sister's family, decided one Sunday morning to surprise my Grams for her birthday. We had actually schemed this plan for months, but my sister's family was hit hard with multiple viruses, and with multiple kids, someone in their house was sick for four weeks straight. We did not see them during this time. And they live like 1/2 a block away. That's how serious and determined I am to keep my child well! Darci and I had secretly canceled the secret trip (only my mom knew about our intentions to come) due to their long bout of illnesses, but they were feeling better all of a sudden so we braved the trip. My mom had planned to have my Grams and Paps out for a birthday dinner, and we all happened to be there to greet them when they walked in. She was shocked and overjoyed. We hid our cars in the back lot, and my Paps commented when we he saw all the cars back there that it looked like a used car lot ;) We had a very nice visit... Grams turned 87! My Paps is on hospice and steadily declining. Neither are in good health but my Paps has been in a pretty severe downward spiral. If he makes it to his birthday in May, he will turn 89, God willing. They have always been, and continue to be a huge blessing in our lives!
I went to the doctor (primary care) last week. I told her of my worthless visits with the rheumatologist, and she told me the rheum. never sent any information to her regarding my appointments or the million blood tests she ran on me. Fantastic. I briefed her on what happened, reminded her of my RA type symptoms (extreme, progressive, and chronic joint pain, chronic fatigue, numbness/tingling, insomnia from pain, etc.). I also reminded her of the chronic GI symptoms I had been experiencing. She spent a lot of time with me. She asked a lot of questions. She told me that she wanted to run a Celiac blood panel on me (the reason I went in, but I hadn't requested it yet from her). She said from what I was explaining it sounded like a gluten issue. She said since the joint pain accompanied the GI stuff, she would be surprised if it were strictly a GI issue. She's a good doctor... a practitioner of traditional/conventional medicine, but a good physician. I waited in the waiting room for 45 minutes, and finally told the receptionist that I had to leave because my son was napping and would be up soon and I had to get home. Apparently she had never checked me in properly (although I gave her my new insurance card, signed some stuff, and filled out a change of address form). The doctor didn't know I was there. Awesome. The nurse was upset and rushed me back. The doctor spent a good amount of time with me. They have a lab there on site for bloodwork, but it was during everyone's lunch hour (including the doctor), so the lab tech was gone. The doctor told the nurse to come back in an draw my blood and I heard her say she didn't want to... that she wasn't familiar with it, and that she wasn't comfortable... seconds later in she came. She was shaking and told me that she wasn't good at it and that if I didn't have "good veins" (I have fantastic veins, actually, so that's helpful), she wasn't going to try. AWESOME. She did fine, and three tubes later we were done. I called Friday and again today for results. I got a call back late today from the nurse stating that results were "inconclusive", meaning there were no abnormalities found. AHHHHHHHHHHHHHHHHHHHHHHHHHHH. I mean, I expected this because from what I've read, these issues are hard to diagnose and pinpoint, and the bloodwork is rarely conclusive. Fan-freaking-tastic. The doctor wants to refer me to a GI specialist that will probably tell me I have IBS because they won't be able to pinpoint anything else. I can't begin to convey the desperation and fury that's radiating through me as I write this. You have no idea. I have been talking to a few friends who know a lot about this from experience, and it seems that seeing an alternative doctor might be the best way to go. For myself and for Asher.
Asher's hernia seems to be worsening, as well as whatever food intolerance that's plaguing him. My sister works for an Early Intervention agency and she does pediatric physical therapy for the little ones in their homes. She has a Registered Dietician on staff and she's asking her about Ash. She told her how he presents and she's asking for her advice in how to proceed (as in, what professionals are appropriate to help us get to the bottom of this). Just a few of his symptoms that match exactly to gluten issues in children are: distended belly with very thin limbs and bottom, rapid decline in growth, unexplained iron deficiency anemia, blotchy/patchy recurring rash, several excessively smelly stools/day containing undigested food, trouble sleeping, excessive tiredness, unexplained fussiness, insatiable appetite, recurring illness/ear infection, reflux, dairy intolerance, dark circles under eyes, etc. HE HAS THEM ALL, and has for a good long while. I don't think the hernia and split abdominal muscles are related to the other stuff, I strongly believe he has a food intolerance on top of the hernia (and I'm convinced it's a true hernia now, based on the horrifying nature of it worsening). His surgical consult can't come quickly enough. We plan to call his pediatrician this week to discuss the other symptoms of food intolerance because I'm not satisfied with him being deemed "fine" just because he doesn't have full-blown food allergies. HE'S SOOOOO NOT FINE. Please pray for him and for us. Pray for his little body and pray that we would be aligned somehow with the proper professionals to help us both. We desperately need it.
Asher and his little cousin, Emery, or as he calls her, "Ri Ri", playing at Mimi and Grampy's :)
My sister and 2 of her 3 little ones, playing Uno with Grams
This one is a good representation of his bloated belly. It's so bad now it's affecting his posture, which has affected his walking. It's not good :(
Blowing kisses! Something he does a lot of these days! No he doesn't have a black eye. These are his chronic dark circles.
This is his "cheeeeeeeese" face. We're working on it ;)
He built this tupperware structure on his own. He is definitely his daddy's son.
Helping with laundry... we use washcloths as hats. This time he counted them (up to 10) as we put them on!
He LOOOOOVES his Christmas present from Aunt Tarah and Uncle Ryan! He "builds" with it daily.
No comments:
Post a Comment