Tuesday, September 22, 2009

Julia has an appt at the Liver clinic on Oct 21, and will head to the brace shop next week to get SMO's (small feet-ankle orthotics, that resemble a high top sneak with out the tongue). These will give her ankle and nearly flat feet more stability and support. I just feel bad for Julia, more Dr's, more procedures. she has had to endure so much in her little life, and now this. angry, becasue we were never told that she has Hep C, a contagious communcable liver disease. Not going to change things, can only move on and get her the great medical care she has received since being here. Still sucks anyway you look at it.

Monday, September 21, 2009

Julia saw Ortho today. All was well, except her hips rotate out too easily, she is like a toddler learning to walk, wide gait, arms out or bent at the elbow for balance. C spine is fine, scoliosis is only 10 degrees, knee caps only slightly loose, better than Matts. she needs braces called SMO's, like a high top sneaker for her feet, ankles to have more stability. Left the Ortho appt feeling good, and drove Julia for her afternoon school tutoring. Right before dinner the phone rings, saw childrens hosp on caller ID, thought it was some recording for an appt reminder, than I hear the GI Dr voice and picked up. He proceeds to tell me "I want to talk to you about Julias labs I ordered" I just thought they would be normal and he was just getting back to us, routine call, NOT. He told me that our little girl has Hepatitis C, she is not just a carrier, she actually has the virus. I asked him to repeat himself, and to hold while I got some paper and a pen. Julia and I head to the hospital Weds for repeat labs as to not have a false positive, as she is having an upper GI. GI has contacted 2 of his colleagues at the Liver clinic on our behalf and we will see what these new labs show. I am really stunned, can't stop thinking about it. We have to have some precautions in place in our home now. I have a feeling that the labs will show the same, but am praying this is a false positive. Dr felt she has probably had this since birth, but really don't have any documentation other wise. She could eventaully have liver scaring or cirrhosis. At least if she does have Hep c, she has adequate nutrition now, and great medical care, so that will help. Better than langushing in the Orphanage. I'm really bothered by this. I had plans for Julia and I to go to Fenway Park tomorrow, to enjoy a great day courtesy of the Genesis Fund, not now, will be on the phone with numerous Dr's and insurance. Just really sucks.

Tuesday, September 15, 2009

Julia went to the dentist at Childrens Hosp-Boston this monring. Her teeth are a disaster, and some are rotting. She has a mouhful of plague, all her molars have cavities, she need to have 3 teeth extracted and replaced with crowns, major tooth decay, a cross bite, and her teeth are grinded down a little from grinding them. I hope to get them done when she is in the OR for the tonsilectomy, scheduling will tell. We prefer to get all of this done while she is under in the Or, vs putting her under again for her teeth. Tomorrow she has 2 school evals, PT and Speech,

Monday, September 14, 2009

Julia had an appt with ENT Dr this morning. I knew she had apnea and snores badly, sounds like she's not getting alot of air when she's sleeping. We reposition her in hopes she will breathe easier. The Dr took her history, what there is of it anyway, pretty much starting from scratch. the findings are, she has extremely large tonsils, both ears are completly impacted with wax. The Dr couldn't even visualize the ear drums or tell if Julia has fluid in there too. So, she will have a tonsilectomy, he will check Julias adnoids while in the OR, clean out her ears, if their is thick fluid she will get tubes placed too. she will also have a uppper GI done at that time, sicne she will be in the OR under anesthesia. I was relieved when ENT said "no, I'm not going to order a sleep study" he told me, "I trust your judgement, know what your seeing, you have been down this road (bio son had a tonsilectomy, same Dr 3.5 yrs ago), I believe you when you're telling me Julia is having apnea" She will have a tonsilectomy soon, at the hospital, while spend the night in ICU, and just see how things go to as for discharging Julia post op. tomorrow, Julia is going to the dentist at the hospital, her teeth are aweful, alot of plague, she battles about opening her mouth for teethbrushing of her molars. She is sensitive to cold, like popsicles, cold drinks, etc. She will need labs drawn for pre op tonsilectomy, and some lab orders from GI Dr. right now she is at school being tutored. Has 2 school evals this week on Weds, PT and speech. Maybe cleaning out her ears will help her to speak, time will tell I guess. Her world will really be amplified after both ears are cleaned out.

Thursday, September 10, 2009

Today, Julia had an appt at Childrens-Boston with the GI Dr. As I have mentioned, I knew that Julia had (GERD) reflux, that she was diagnosed with, and a degree of lactose intolerance. I really like Matts and now Julias GI Dr. We have known one another sicne Matt was about 6-8m old, and Matt turned 7 today, happy birthday to the my big boy, AKA Charming Fellow. GI walks in, and says congrats, welcome back, and gave me a hug. Went over the trip to Ukraine, as he is of Greece nationality, and goes to Athens once a year, kind of knows what goes on as far as kids with disabilities go in Europe. We went over Julias labs, stool culture, and find out, unbeknown to us, that she does have some parasitic infection going on from her stool cultures, as we were told that no known stool infection was sent to the Pedi. GI mentioned, that he may have to consult with infectious disease, but will let me know if he does regarding the stool infections. He told me that I have "expertise" in many specialities, and if he does consult with ID, he will ask them to teach me alot, to have more "expertise" in another area. I felt proud of myself. I have leanred alot over the past 7 yrs when Matt was born, from his 8 Dr's. Julia will be on an antibiotic to clear that up. funny, GI asked about Julias stool, and I said to him, "how I can say this easy without being gross", and thought jeez, he is GI, ok to be gross, so I was and didn't faze neither one of us. GI want to order more labs, as HEP B and C, have an upper GI done in 2m or less, no rush, as kids with DS are prone to GI isues, and we don't have alot on Julias history. He thought Juia was beautiful, Dr speciality is kids with special needs with GI probs anyway. He felt that we could have the UGI in the hospital satellite or the hospital, I told him, absolutly the hospital. I think Julia thought this Dr was as great as I do, she kept hugging him, giggling. she did well. Over the past 5 wks since being here, she has either grown 2-3", and has grown a foot size, 6.5 toddler shoe to 7.5 toddler shoe. I realized this becasue she had a small blister on the top of her right big toe, went to the shoe store and her her feet measured, A WHOLE SIZE! tutoring is going well, and I'm wiped.
Catch the first football game off the season, Steelers VS Titans, Au Revior

Saturday, September 5, 2009

Asley and Matt have gone back to school, and Julia and I hang out together. We have gone clothes shopping for the kids, visited with my mom, her grandmother, she was at the beach yesterday. Julia has also started her education. She is getting tutoring 3 afternoons a week, about 90 mins with a wonderful SPED teacher that I have known for about 2 yrs. The teacher has been pleased with what Julia has done so far, she also feels that Julia has alot of potential, we do to. Yesterday we received the Geneic-developmetnal Dr note fro the appt Julia had with her. Her height is less than the 5%. (knew that), but about a 4 yr old, weight is 32, about a 3.5 yr old, head circumference is that of a 20 month old. Under developmed much? since Julia has some right sided weakness, the Dr is concerned and wants to rule out a possible CVA (stroke). Doesn't surprise me. Just add a Neurologist onto Julias Dr list. She will be seeing GI this thurs, know she has reflux, hope she doesn't have any damage to the lining of her esophagus over it. I gave her some of a hot pretzel from the mall last week, the big doughy ones. It came up within 5 mins, thought she was going to reflux all over the floor of Sears, coughing, gagging, screaming, crying, she had so much reflux, her cheeks puffed out a little, and it went back down, she was crying after. Think I would have too, the stomach acid going up and down with the amount must have hurt. I know she will need medication for that. She still has her funky behavior, flop and drop anywhere, hit her head into the floor, etc. Guess I should get the girls some breakfast.