Monday, March 28, 2011
The beginning of March was not a fun one for Julia. I think it was the 2nd or 3rd, school calls, "Julia does not seem to be herself, crying non stop, grunting, holding her abdoman, not eating, is definatly not the norm as she is re obcessed about food, eyes glassy, has a low grade fever. Off to go get her at school, she was like what they had said, except her balance was off too, was extra clingy, did feel warm. the only time she would stop crying was riding in the van. I called the Pedi, got her in about 90 mins later. She was really guarding her abdoman, mainly the bottom right side, where the appendix is located. the Dr and I just looked at one another, and he said maybe, try to keep her hydrated, if she becomes more lethargic, increased fever, take her to Childrens, or the local hospital if you feel that is needed first. She seemed to be getting better as the afternoon went on, about 4:30, she began to be more on the lethargic side, still guarding the abdoman lower right side, increasing fever, as this happens, the phone rings, the Pediatrician calling to check on things. Told him the deal, than I called my husband to come home from work, as I'm taking J to Childrens ER to rule out appendicitis, and/or a bowel obsrtuction. They took her quickly, an IV was placed for hydration, morphine for the pain, numerous Dr's coming into her room, all agree she should be admitted. Over to U/S we go, appendix looks ok, over to x ray for an abdominal one. Turns out little Miss funkmaster was impacted with stool, basically full of it. Enema alert! that was gross, but productive. We finally got up to the room at 3am, Julia has long been asleep on the stretcher for a while, I was wiped from being up almost 24 hrs. We hng out, numerous Dr's checked her through the following day, and she was discharged about 6pm, home by 7:15. Kept her home from school the next day. That night, at home, she slept about 14 hrs. the Pedi and I feel that in the end, Julia probabaly had some sort of virus giving her the fever, as she is a licker of unkown objects, not from needing to be cleaned out. We have upped the miralax and ex lax amount after I spoke with GI. Her muscle tone is so low, things don't move well. she is also back on the anti psychotic she was on when she first arrived her 21 monthes ago. Having aggresive odd behavior, seems to help. She is re obcessed with food, even before this med was re started, as it increases ones appetite. J recently had an appt with endocrinology, the Dr was very nice. she gave me a script for synthroid for Julia, as her thyroid is off too. Recently I got the note back from J's developmental Dr, her head is the size of a 21m old, developmentally a n 18m old, our 8 yr old toddler, figure her brain is pretty tiny in that little skull too. I did ask her developmental Dr if she thought J may have fetal alcohol as she is so very small, the Dr felt that her birth mom may have had more than one drink while pregnant with her, we can't prove it, but the Dr felt that most likely she does, even though people with DS are small in stature, she is very tiny, about the size of a 4 yr old. It's still amazing when I look at Matt, since birth he has had the best medical care, loving family, nutrition, early intervention, pre school, doing well in elementary school, alot of services to help enhance his life, everything a child needs to succed. Than I look at Julia, who was abandoned by her parents, no love, lack of nutrition, no stimulation, negelected, on an adult anti psych med for who knows how long, which her Psych Dr feels gave her some brain damage, absolutly nothing, but a roof over her head, which reeked of urine. I wonder what her life would have been like, had she had all the advantages that he had from birth up to now, never know. she looks like a toddler next to Matt, and they're only 2m apart in age. Back to Matt, he recent;y got an 80%, and a 100% on a reading comp test. the other day he informed me that "mom, some day I will be driving, I'm going to start saving up for a car of my own. Maybe Matt will be one of the kids with DS that will drive, that really scares me. Last thursday, went to the first of Ashleys orientation to middle school, that floored me too, I just can't believe that she will be 10 in June. Another 10 yrs, she will be in college somewhere, she'll always be my sweet pea.
Friday, February 11, 2011
10 days ago, Julia had an appt with the hep RN and the liver Dr for her 6m post treatment appt and labs. Her labs were a little off, nothing out of the norm. The Dr was really waiting for the viral level to come back, flt that since Julia had done so well and responded favorably with the 6m treatment we had done last year, we all were positive that the virus was gone. the Dr got that lab back 3 days ago, it is not meant to be. the virus is back in Julias system. We are now looking at another 48-49 wks or 11 monthes of another round of treatment. The Dr, RN, my husband and I thought this would all work out in Julias favor, just really sucks. The Dr figured that the DNA of the virus she has, is one of the easier to treat. wonder if it's Julias funky self. She stops treatment, does the virus just start regenerating itself, her metabolism, anotomy and/or physiology of her liver? Maybe she needs a liver ultrasound or scan? I was stressed, stunned, and crying a few days ago about this. Just start up treatment again soon and keep praying. Her thyroid came back high as well this lab. this level fluctuates between high and normal every other lab, normal, high, normal, high, etc. I got an appt for Julia March 9. Always something.
Tuesday, January 25, 2011
Matt said something very funny yesterday. I drove the 3 kids to school as the buses were late from the freezing temps. After dropping Ashley off, Matt wanted to hear the song Two Hearts, by Phil Collins, one of his faves. I put it on, played it twice on the way to school in the van. Julias gone off with her aid, and I was talking with Matts SPED teacher, and than she tells Matt, "you have an aid today, Mr. Collins" Matt than starts jumping up and down, so excited, "Mom, Phil Collins is going to be my aide today, can sing Two Hearts" We than had to burst his bubble, sorry Matt, his name is Steve. Matt than said, ok, I guess, he sounded so bummed. Leave it to Matt. Katey Perry is coming to Boston in June, around Ashleys birthday, got me thinking, she would love that! Better than planning a party, and easier.
I am so sick of snow!! this winter we have been pounded with snow. On to Julias next medical visits in her life. Last week she went to the toilet training clinic and dental clinic at Childrens hosp. We are so done with changing gross, wet, poopy pull ups from Julia. We know she can't help it, not doing this out of spite, so we just keep changing her as need be. We have been having her use the toilet, has urinated in it alot, but no communication from her. We think she would just be content not to be bothered even in a soaked, poopy pull up against her skin for who knows how long. We only know since she'll stink. so after all the chatting bout this topic, the developmental Dr and nurse practioner who saw Julia, my husband and I, and her gazillion Dr's feel that she is 18m developmentally. Put that together with the significant delays, DS, very low muscle tone, living 6.5 yrs in the orphanage, encephalopathy, etc. the Dr asked me what we thought a good goal was for Julia to be potty trained, I told her, we would love it by the time she is 16. the Dr thought this was a very realistic goal. Another 8 yrs of toilet trining will just suck, but hoping before then. the Dr also ordered an abdominal x ray to check if stool was moving, nope. Julia was impacted with stool, looked like little sausage links sporadic in her bowels, even halfway up her back. I looked at her x ray with the Dr and nurse, by accident I said "holy shit, it's even up her back. I'm usually the "Professional parent" at the kids Dr's appt. The Dr just looked at me and said "yes". the Dr felt that since Julia had alot of stool impacted that we go the one square ex lax, miralax route to get this cleaned out, and than can give her benefiber once a day. the Dr asked when Julia would be seeing GI, as she felt that maybe Julias bowels don't contract that well, coupled with low muscle tone=impaction. Julia has a GI Dr, and all ready has an appt in a few weeks with him, another thing to bring up other than reflux. Back to the pottying, as Julia is developmentally 18m old, way too young to start training, so just keep doing what we're doing, hope for the best. i'm so glad that the Developmetal Dr was there, she is also the director of the Internation Adoption/foster care program and has known Julia since Aug 09. I asked her what she thought of Julia and PDD, and the Pscyh Dr agreed, even though developmental didn't see Julia for that, she agrees with the Psych Dr, asked how I felt about this new diagnosis. We just feel bad for Julia. Chatted for a few more minutes, than left for the dental clinic. Julias teeth are still not great, still have plaque, severe over crowding, etc. she had a little baby tooth pulled as hopes of the 2nd front tooth coming in that spot, no room with the baby tooth there, was slightly loose, the procedure only took about 30 mins, no OR so that was good. The dentist was the one that was involved in her oral surgery last summer, so he knew her well. He said he did feel the front tooth at the gum line, her front teeth are huge, like in the movie, Nanny McPhee. hoping she will have that tooth come in quickly. The first front tooth came in about a month. Julia started getting sick about a week ago, didn't wait as long as we did last time to have her checked, as last fall with pneumonia and sinusitis. I brought her to the Pedi after 3 days of the runny nose greenies, coughing, being tired, unusually clingy, temp. She has a right ear infection, and the Pedi thought she was on her way to another bout of sinusitis, so he figures clear them both up with amoxicillian. she's ok, and at school. Yesterday, the phone rings, town number while kids at school=panic attack. the school RN, "Julias hands are rather purple today, what should I do?" thought to myself, not to send her home. I just told her run them under warm water, keep her inside, not much else you can do, her circulation isn't the greatest under 60 degrees. Even our house is 70 degrees, hands and feet purple. If the school RN is calling commenting, guess I should call Rheumotology now for an appt. Expecting another 10-15" of snow weds night into thurs, kids home another day. this rate, they should have school until July. guess I should go get some errands done, before I know it, the school buses will be here.
Monday, January 10, 2011
I still had a sneaking suspiscion about Julia and autism. Her social skills and eye contact just suck, she prefers to be alone, in her room, door closed. She just goes along becasue she has to. Christmas eve was at my sis, she has 3 girls, so they're not strangers to Julia, BIL, my brother, my mom, and her husband were there. Julia wouldn't even barely look at them, never mind babbling to them. she either obcessed over the food, or would just walk from the kitchen, through the hall, to the living room, and back around again, about 50 times. Basically no interaction at all. the obessive behavior, repeatative behavior, having some agression at school, seen some regression. So I sent an E mail to the psych Dr, who was out of town, and page him after the date he returned. I told him what we have seen, he knows her quite well, has been seeing her since she came home, which was almost 18m ago, hard to believe. After speaking with him, he diagnosed her with PDD-NOS (pervasive developmental disorder-not otherwise specified) is a diagnosis of the autism spectrum. We are not at all surprised, she is so funky. Just another label, that will hopefully get her more services at school, and possibly we'll get some speech, more OT for her through Childrens or someone else locally. I spoke with her sped teacher, and we'll have a meeting soon, with the behaviorist. Hoping at some point this label will be removed.