Facing Decisions

Elise has been doing really well lately. We're no longer hearing complaints from school, so that's a huge stress relief. She's really connecting the use of expressive language for her wants & for labeling. She'll now ask for help, respond hi or bye when people say the same to her (unprompted), seems more comfortable using labels in front of people (she used to practice alone and stop when she'd realize others were listening), will say "I want ..." and is producing more kinds of sounds. I'm incredibly proud of her. It makes me cry to realize how hard she has to work to do such a simple thing like tell me what she needs. I admire her so much for continuing to work at this instead of giving up and retreating into her own world, which I'm sure would have been much easier for her. I believe we've, at least for now, successfully instilled a desire in her to join the world of neuro-typicals. As long as she has that desire and we can provide the proper tools for her learning, there is no limit to her potential. I do still live in fear that she won't maintain that desire or that we won't know or have the ability to provide her the tools she needs. Then, she could be lost. I try not to think about that. At least for now and for the near future, we seem to be on a really good track.

The last few weeks have been difficult. I worked really hard to schedule time with a nearby doctor who works with autistic children from all over the world. I've invested a lot of faith and hope that he will be able and willing to work with us to help Elise. He says everything that I've been longing to hear since I first realized Elise may be autistic. He says that she is medically compromised and that her medical needs should be addressed, not ignored under the autism label umbrella. What I mean by this is that there is a tendency to write off many of her seeming health issues to "autism", a neuro-psychiatric disorder, instead of searching for medical reasons to her individual symptoms. For example, the fact that she is sick much more often than anyone else in our family, that she has constant dark circles under her eyes, that she has BM's that regularly will clog our toilet. that she has been noted to have hypotonia, and that she suffers from speech apraxia and anxiety. True, all of this things are commonly found in certain autistic individuals, but they are medical concerns in and of themselves.

This doctor theorizes that autism stems from a neuro-immune deficiency in these children. Many of these children come from families where auto-immune disorders are prevalent. Many of these children were born to mothers who suffered unexplained infertility and who suffered pre-eclampsia. Many of these children were born prematurely. A fair number of these children are part of multiple sets. Many of these children developed typically for the first year of their lives and then slowly signs began and then exacerbated, sometimes suddenly. For Elise, there were very few signs in her first 12 months. Sure, I can pick apart things now, but frankly I could also pick apart things for her brother A in his first 12 months too, but he's not suffering from autism. After 12 months, signs began and there was a slight worry that grew until her 2nd birthday. At 24 months, it would be a lie to say I wasn't becoming very worried. At 25 months, she slipped away from us overnight. No one has ever been able to explain to me how croup resulted in us fully losing her to autism. In fact, until this doctor, no one seemed to even think there could be a correlation. I'm not a fool, croup of course did not make my daughter autistic. However, that virus triggered the autism process that had already begun and it turned into a full-blown, undeniable loss, that occurred literally overnight. The child I took to the hospital that night was not the child I brought home. If it hadn't been croup, it would have been something else. I know this in my core, but someone needs to believe me when I say that I also know that virus affected my baby tremendously, way more than seems medically reasonable. This is what I believe, no, this is what I know. Others may call me crazy, but for me this is fact.

In steps this doctor who is frankly quite a zealot. I've placed much faith in his theories because they line up so perfectly with what I independently say I know. Are my emotions interfering with my judgement? Perhaps. God knows I'm always quick to doubt myself. The doctor wants to start Elise on a course of Valtrex. This is the medication that is used to treat Herpes. It is an anti-viral. There really is no reliable test that shows Elise has a virus that is contributing to her autistic-like symptoms. However, he believes as firmly as I do, that this is at the root of Elise's problems. The standard practice for him is to try a course of Valtrex. If she becomes irritable and reacts in negative ways initially, then you keep up with it as it means the Valtrex is working on a virus. If she has no negative change in her behavior, then we're both wrong in our belief. In steps hubby. He, in not so many words, basically thinks we're full of sh@# with this theory. He doesn't trust the doctor and worries that he may actually be harmful. I never imagined that our gut feelings could be so polar opposite. Without his support, I can't start Elise on a pharmeceutical. That would be really wrong. However, I honestly don't think that I can live with the question of not following my own gut feeling and trying. It's been a challenging two weeks. Tonight I e-mailed Elise's pediatrician to see what she thought about trying the Valtrex. We both trust her opinion. If she says it's not harmful, we will try the Valtrex. I just hope that, if we do try it, hubby will be willing to stick with it long enough if Elise does react with negative behavior to it. I'm frustrated that all of the work and research I've done on this, the hours I've spent and the hope I've invested, has possibly been for nothing. I chose this doctor in part because he is a board certified pediatrician and believes that many of the things the DAN doctors are doing with mega-vitamins, chelation therapy, HBOT and other things are harmful. This doctor is taking what he feels is the "safe" route to helping autistic children. I see him as the in-between to the riskier DAN doctors & the laissez-faire mainstream pediatricians. I just don't want to let go of my strongest hope to date.

Well, all of that said, Elise is steadily improving. She's trying to interact with her brothers now, is enjoying school, understands everything and is solidly a typical 2 year old. Of course, there are many things that are more developed than a 2 year old, but with her communication & social delays, she has only accomplished all the developmental stages up to what I assess to be a new 2 year old level. When I treat her as a typical 2 year old instead of an autistic 4 year old, she seems to respond very well. I try hard not to focus on the fact that my 4 year old is only fully developed to a 2 year old level and that others may not even agree that she is that far along. I chose to focus on the fact that last year at this time her development was very jagged and several key things were keeping her on a baby level. She has moved forward and is being taught all of the key developmental stages in the correct order and is open to learning them. When she's 20, it won't matter if she's like an 18 year old. At some point, 2 years difference will be pretty meaningless. We just need to keep her moving forward and on track each year now.

I have my repeat ERCP procedure on Monday to have my biliary stent removed. I'm sure all will go well. I've been overly paranoid the last few days as I've suddenly been becoming tired again and needing to take Tums. It's probably just due to the stress of our home buying situation, the audit at work and my boss quitting (lots more responsibility and work on my shoulders), the upcoming procedure, Elise's medical things & life in general. Hopefully some of these stressors will resolve this week. For sure, the procedure stress will resolve :)

Running on Adrenaline Only

This week has been crazy! Adjusting to an increasing work load at work, working with a new boss, adapting to hubby's long commute and less availability to shuttle kids places, attempting to finalize our loan so that we can close on the house, complying with Elise's new doctor's advice, worrying about Elise's school situation, saying goodbye to my favorite boss, just a busy time. Basically, all is really good right now, just hectic.

Elise has had a good week. She is still on her antibiotic. 7 more doses to go. I can't wait to finish because she really hates taking this medicine and I hate making her take something she hates. She seems to be feeling well. Initially she became odd after starting the antibiotic, as she usually does on antibiotics. However, about 4 days ago, her stimming returned to normal and she's been doing well. We've dropped her Abilify back to .4ml from .45ml. Provided all is going well, we'll adjust it back to .35 ml next week.

I picked up the forms Elise's babysitter and I will need to complete to volunteer in the classroom. Both of us need to have TB tests before we can volunteer. I'd like to have that done early next week. The week after next, I'm volunteering in A's classroom for an hour. A is still young enough that he's excited to have mom come to his class. I'll enjoy that while it lasts. I'm hoping to get some doctor appointments scheduled that same day so that I just take the whole day off work and minimize time I'll need off work in the future. I have my ERCP test scheduled for 2/21 and that should be the absolute last of this whole gallbladder/stone fiasco. I'm not looking forward to another hospital day though.

Elise's DTT supervisor observed her in class last Monday. She said that Elise did ok but that she really needs an aide. No disagreement on our part. She thinks having Elise's babysitter attend with Elise would be wonderful. We'll see how it goes. Babysitter is willing to do this, but if it makes her uncomfortable or anything, then it won't work. I do find Elise's teacher to be odd. She's incredibly stuck on the fact that we're not sending Elise 5 days per week. When Elise's DTT supervisor asked whether she could help the teacher with any problem behaviors Elise may be exhibiting, the teacher didn't really ask for help, she just asked whether Elise's home schedule could be rearranged so that Elise was in school 5 days per week. The supervisor explained that it was the parent's decision so the teacher would have to talk to us about this. Kind of irritating that she's not letting this drop. She even told me how most of the kids had a better, more even mix of school & home based therapy. I smiled and said that we felt Elise had proven she learns best in her home based program so that we were not going to reduce that. Inside, I was smoldering because I wanted to lash out and say "The other parents weren't blessed with the gift of 30 hours per week from Regional Center and if they were, they wouldn't have to send their 3-4 year olds to school so many hours each week." Just sayin...

So, I'm trying to keep an open mind to this school thing, but it's not easy. Time will tell. The positive thing is that Elise seems to be happy when I drop her off and happy when the babysitter picks her up. I'd assume this means she likes school. There are two little girls in her glass who really like her. They give her hugs each morning and like to help her. She appears not to pay attention to them, but I can tell by seeing her eyes laugh and by her little quiet smirk that it makes her really happy. That my friends is the crux of the reason that I do NOT want her in an autism only classroom . This would never happen in an autism class.

More News

Elise has been busy the last few weeks. She had a doctor visit with her neuropsychiatrist a couple of weeks ago. It was ok, but it's becoming a lot of money to spend for not a lot of support. It seems that Elise is basically on maintenance at this time with her and we're still hoping for much more significant progress. I don't think the doctor is doing anything wrong, I just think we've gone as far as we can go with her at this time. We need to shake things up a bit and continue our quest for answers. In comes her next appointment with an area pediatrician who has spent the last 12 years specializing into hypothesizing a link between autism and neuro-immune disease processes.

I've been interested in this doctor for a few months now. I may have mentioned it in the past, but I spent quite a bit of time putting together a history and records for him to review prior to this appointment. The appointment was very long (3 hours) and very thorough. Unfortunately, hubby was unable to attend as he had a crucial meeting at work at the same time. The doctor wants to make some fairly significant changes for Elise. He has a do's & don'ts of diet that we should be implementing. It's not much different from what we already do, just eliminating whole wheat products and almond milk are the biggest challenges we'll have. We're also trying to move lighter on carbs and increase her protein & vegetable intake. Some of the things are quite different from what we've been told before, so hubby is questioning it. Since it's not harmful and we're somewhat there already, I think we should just get creative and come up with some new meal ideas that meet this criteria. We'll see. I switched to a potato bread last week and my kids told me that they don't like white bread. So funny, they only like the whole grain wholesome stuff.

Elise had a cold when we went to this doctor. When he checked her ears, he saw fluid built up and she had been whiny and tugging at that ear. Therefore, he put her on an antibiotic for 14 days. As I've mentioned before, Elise gets odd acting on antibiotics, so of course, she's been having more episodes of hilarity, is stimming more and is less attentive. However, she's not hurting any longer and is sleeping better. She had blood drawn at the office and we go back on Feb 11 to discuss the results. She also has a prescription for Valtrex. I want to know more about this before I give it to her. We'll have to have more pointed questions for the Feb 11 appointment. It was a lot to take in at the first appointment. I'm trying to get hubby to spend time listening to some of the presentations this doctor has done. I'd also like my neurobiologist friend to listen to some of them so that I can get her opinion whether the hypothesis makes sense at all. However, she's had 2 deaths in the family this week, so this is NOT the appropriate time to ask this favor. It's hard to believe that people have larger concerns beyond the health of my child - I'm being sarcastic, of course.

Elise has been back to school for the last two weeks. She has been mainly without support in the classroom and, surprise, it's not going all that well. Hmmmm....isn't this what hubby and I knew all along? The child needs an aide if she's going to succeed in the least restrictive environment. We're going to request a behavioral assessment be performed in the new school setting. This may help in our quest to get adequate support for Elise. In the meantime, the teacher seems none to pleased to have Elise as part of her class. She told me on Friday that she felt Elise was too severe for this classroom and that it wasn't an appropriate setting. This made me really angry as it was first of all said in front of Elise and second of all, not true. You can't judge a poor child who has been shoved into a new classroom and an entirely new enviroment where all the other children have been adjusting since September, take away her aide support and expect her to succeed in only 4 classes. Get real. Give her a chance. To be honest, Elise easily appears to have more challenges than the other 8 children in the class. However, it is an aphasia classroom and entirely appropriate for a child with a severe communication disorder. Also, Elise had a comprehensive, very comprehensive, assessment in the fall that determined this exact classroom was the most appropriate fit for her. Grrrr....

To resolve all of this, we are doing the following:

1. Sending Elise's DTT supervisor to observe her in the classroom so that we can have a better understanding of what may help her.
2. Asking the school to perform a behavioral assessment in the new classroom setting.
3. Working to see if nanny (who volunteered to go to school with Elise prior to all this) can spend time in the classroom to facilitate Elise, basically as her aide. The teacher is open to her volunteering in the class. This should help tremendously since having her nanny would be better than having a school assigned aide. She knows exactly what Elise is capable of doing, she is extremely patient yet firm with her and she has watched the home DTT for months now and is very familiar with all the behavioral interventions.

We'll see what becomes of all this.

Outside of this, not much has been happening. We're closing on our new home on the 31st of this month. We'll have to quickly schedule some of the work that needs to be done and then we can move - hooray. We have already provided our 30 day notice to the landlord and we're out of here by the 17th of February. I can't wait!

Put a Bow on It

Things have been going great and are all fitting together into a nice little package. It's like all the hard work of the last couple of years is finally paying off. Elise is steadily improving, her school situation will hopefully be stable and great, my health is fantastic, A loves school, B is doing well, hubby is enjoying work and doing well with it, my latest boss is understanding and allows me to have time flexibility at work without hassling me & we are finally buying a great house of our own. I'd say it all seems too good to be true, but I don't want to be a pessimist. I'm forcing myself to just enjoy and revel in it all instead of analyzing it.

We've been really busy since my last post. We went "home" for the holidays and had a fantastic time. I really miss all of our friends and family there. It's just out of the question to move until Elise is done with the benefits of ABA/DTT services. It's all helping her so much and it's free for us. It's not like we could afford equal elsewhere.

Resolutions

Finally things are beginning to come together for us. Elise has had a fantastic week, despite being sick and missing two and a half days of school this week. It's just a cold and she's recovering well. She's been quite "on" lately. She's engaging easily with us and even with her brothers. She has been laughing with them now. The key word in that sentence is with. She had started laughing at them, but now it's become with them. This is a huge improvement and a significant development in my mind. She can test the waters of peer relationships with her brothers and hopefully then expand that to the wider set of other children she meets. She has also been expressing herself by attempting words much more frequently. She really has the idea of how to communicate, now she needs to work on the physical ability to do so.

The other resolution, hopefully, has been with my health. I had an ERCP performed Wednesday that removed a stone from my common bile duct. This was good timing as my liver function test was not good and the pain was becoming quite frequent and severe. I have had none of the same level of pain since the procedure. A stent was put into the duct and I'll have another ERCP to remove it in 3 months. I am still very fatigued and occassionally have a sharp quick pain that takes my breath away momentarily. I'll have a repeat liver function test next week and a doctor follow-up the following week. Hopefully this is the end of this chapter. The boys have been asking when I can race with them again. Right now my energy is sapped from walking to the car and back! However, having the extreme pain gone is a tremendous blessing.

The biggest resolution has been with Elise's IEP meeting. It's wonderful to have that weight off our shoulders. She will be starting in an aphasia classroom M-W-F from 8-12. She'll have transitional support of an aide for the first week. She'll also receive 40 hours of speech from a non-public agency for the next year. For occupational therapy, she'll have 1-2 hours per week (can't remember which one) that will occur at school in their gym. She'll also have an adult on the playground to facilitate her engaging with peers and for her safety. Not perfection of what we wanted, but budgets are tight and overall it's a decent deal. We're asking for a behavioral assessment to be performed in the new classroom setting. We're concerned about how she'll do with no dedicated aide and a 4 hour day of hard work. She may exhibit more problem behaviors in this setting.

Finally, we are fully into the process of looking for a home. We're waiting to obtain a pre-approval letter and then we will begin shopping. We met with our realtor today and have a bunch of listings to see. The prices look good right now and the interest rates are also good. It seems that we may have very good timing, even if we're only doing this because we'll possibly be homeless in a few weeks if we don't. We're excited to finally buy and have a home of our own. How refreshing it'll be to paint the walls a color of my choosing instead of the dreary dingy standard "white" of all our rentals. I'm not looking forward to having to be responsible for repairs, but the ownership side of things is appealing otherwise.

Anyway, while this is still a very stressful time, things are coming together nicely right now. It'll be nice to get some of our stressors temporarily resolved before the new stressors begin - hahaha.

Lots to Tell

Things are beginning to become really interesting again. Something about this time of year. Someday it would be nice to just deal with ordinary holiday stress again instead of IEPs, medical issues & housing issues and the like. Apparently this is how life works and I just need to learn to enjoy the good and ride through the rough. Easier said than done. Sometimes it just seems like too much piles on at one time. All I really want to do is whine a bit but no one really wants to hear that, although that's completely understandable. Well, you poor souls that read this are going to be subjected to my laundry list of vents and whines. I'll try to keep it short, but apparently I'm emotionally repressed and I plan to use this blog as my mode to remedy that today. More on that emotionally repressed thing to follow - hahaha.

• We are in the thick of deciding what is best for Elise with the school district. As probably all parents who've been through the IEP process would agree, this is very stressful and often contentious. I have to give it to the school district. They are trying to successfully walk the thin line between not offering everything Elise needs but enough to keep us from going to due process again. It's not like we want to go through due process again. I mean, really, in the end all that got us was 8 months with no education for Elise, a bunch of compensatory hours we never were able to use and a 1:1 aide that was spotty in her appearances and spent half the time "fading" from Elise as support. Add to that months of stress. On the plus side, Elise has been happy with school and we've seen progress in the last two months. We've also learned that a class of 23, even with an aide, is probably not the best placement for Elise until her communication skills improve. I'm almost beat down enough on this round to just agree to avoid due process. However, I have to remind myself that it's not acceptable for Elise to receive less just because I'm worn down.
• We're going to be homeless in 53 days. Ok, that's an exaggeration. 7 days ago we received our 60 day notice to vacate because the owner has to sell the house due to divorce proceedings. I don't think it'll sell quickly and I don't think it's that easy to get rid of tenants. Either way, we need to get out of here yesterday. We've been talking about moving forever and this is the kick in the pants that we need. See, another positive to a bad situation. We're working to buy a home if we can get a loan. Otherwise, we'll have to move to another rental. We're definitely hoping for the former as I just want something of our own.
• The property manager is a very pushy woman. She actually has the nerve to ask us to clean the carpets in the home so that it'll show better. What? They were cleaned in July, just to clarify that we're not living in filth or anything. However, we do have a dog and 3 small children - 1 of whom is newly potty trained. Add to that multiple consultants traipsing through the house daily who may or may not be wearing shoes. It's cheap quality carpet and old so, well, it gets dirty quickly. Needless to say, we're not spending a couple of hundred dollars to help the house sell quicker. What's in it for us? This is a fight that I've latched onto because it's actually one where I know I'm right and I have some control, unlike the other stressors we're currently experiencing.
• I've been in continued periodic pain that is interfering with work and caring for the kids and our house - maybe that's why the carpet is dirty? :p It appears that my gallbladder was not the only culprit to my pain. The pain I have is happening more often now, last Sat, Mon, Tues & Fri. The pain is very sudden, intensifies quickly, lasts several hours, is not overly responsive to painkillers and basically, hurts like hell. When I'm in the thick of it, I am completely unable to focus. People talk to me and I hardly hear them. I went to the doctor Wednesday in search of help. He spent a grand total of maybe 3-4 minutes with me during which time he smirked, half-listened and told me to try a probiotic, cut out dairy, and that it was likely Irritable Bowel Syndrome. I asked whether it was possible to have IBS when you have no bowel symptoms. He responded that that would be unusual. Really? Could it just be a misdiagnosis since I literally have no symptoms of IBS except abdominal pain? Augh. The appointment was a waste of my time and energy.
• On Friday, the pain was really bad. I resorted to contacting my alternative medicine doctor for help. There is where I discovered that apparently I'm bitter, judgemental and emotionally repressed. Gee, thanks for clearing that up. While all of that may be true, I seriously doubt that one can experience that level of pain intensity due to emotional repression. At least this doctor is trying to help. However, the search for help is to be continued. At least I feel great in between pain episodes - that's my positive spin again.
• Elise has been acting weird again. This is perhaps the most disappointing thing of all. She has been having episodes of hilarity frequently again. This is where she falls into peels of laughter at God knows what. It's very bizarre looking and frankly resorts in more than a few stares when we're out and about. I know I shouldn't care about that, but I do. Interestingly, she hasn't had probiotic for 3 days and she's been having sugar treats still. I really think there's a link here. Tomorrow my mission is to purchase that probiotic. Apparently for both of us since according to idiot doctor on Wednesday this may magically heal my pain.

Well, that is my "short" vent. I actually feel better. I hope I haven't lost everyone as readers in the process. I swear that the next post will be more Elise-centric as that is the focal point of this blog. While she has been acting weird again, she has had the following positives:

• She is becoming increasingly spontaneously verbal. She's not really saying anything new, but she is more often using words to express herself without us prompting her to use her words. This is a huge first step for her.
• Elise has begun to laugh at her brothers and tease them. Last week, she kept putting her feet on A's shoulders while they sat on the couch together. This resulted in A whining and complaining. This seemed to inspire Elise to continue (such a normal sibling behavior - yea, Elise). It eventually resulted in A howling which Elise now thinks is hysterical. She laughs when A or B start crying loudly. It's actually quite amusing and makes it difficult for us to be serious and tell Elise that they are sad and she shouldn't laugh. When you look at it from an autistic brain perspective, their complaining crying must be riotous. What I mean is that Elise's sees things very literally and will likely only know empathy as something that she is specifically taught. Hence, the reason we have to explain that A and B are sad and that Elise shouldn't laugh at them. To imagine what it must look like to Elise is funny though. Imagine seeing how they make those funny screwed up faces, jump up and down, scream. Well, it would be funny if you didn't relate an emotion to it. Either way, it's showing an interest in her siblings instead of just ignoring them.

See, I managed to end on a positive note. Next week I'm on my own with the kiddos as hubby is going out of the country. We're attending a Thanksgiving dinner at my friend's house. There will be over 40 people there. Poor Elise! I'm insistent that we not alter our lives too much and become reclusive because social gatherings are overwhelming for her. Therefore, we're going and we'll have a good time. She will deal and it will be a learning experience for her.

Until next time.

Almost 4

So, Elise is turning 4 this Monday. It should be a day to celebrate, but instead it's really sent me into a deep funk. It feels like time is slipping away too fast without significant improvement. I try to focus on all the little improvements and stay positive, but when I step back and look at the big picture of overall development, I feel like I'm falling apart. It doesn't help that this birthday milestone coincides with a comprehensive evaluation by the school district. I've mentioned before how "well" Elise does on evaluations - not. Dismal is my expectation for those reports. I spent an hour (of work time, no less!) on the phone with the school psychologist who is observing and evaluating Elise. We went through the same old thing about her history. Nothing like bringing the tragedy of watching us lose her all back to the surface. Then, we get into what he's observed and more specifics of what we say she is doing developmentally. Of course, this is always where there is a vast disconnect. Elise does way more for us in the comfort of her own home and routine than she does for the strangers observing and evaluating her. We're not stupid though, we realize these differences are chalked up to the fact that we're madly in love with her and see it all through rose colored glasses. Probably the truth lies somewhere in between, but I believe it's much closer to our side.

I'm just really scared and worried about what the IEP will involve this time around. I just want the best for her and it's such a battle to not have her seen as cognitively impaired. Everyone, without exception, who has worked with her for any length of time recognizes that she is very intelligent. That intelligence is just locked really tight inside her right now. I don't want her sent down the wrong path because she's unable to demonstrate that intelligence. Sigh, it's just a hard time right now.

Elise has actually been stimming a lot lately and has been more irritable again. We think this could be related to the Sertraline she's taking every morning. The oral syringe we use to dose Elise has had the numbers and markings mostly worn away. We think it's possible we've sometimes given her .05 or even .1 ml too much Sertraline. We know that can make her irritable. We've been searching for a place to provide us with a 1 ml syringe. This is not as easy as it sounds. Our pharmacy says that they don't have one. When I asked how I was supposed to dose her .25ml properly when the first marking is .5ml, I was told that "Well, you just measure halfway to the .5ml marking." Duh.....as if I couldn't have figured that one out. Apparently it didn't occur to this pharmacy individual that this methodology wouldn't provide consistently accurate results. On to the internet search. We found 1 ml oral syringes on the internet, but we have to buy by the 100 and the cost with shipping is $35. I didn't get far enough along to see if lay people can order without doctor referral. I contacted Elise's pediatrician to find out if she had ideas what we could do. She told me that they have 1 ml syringes they use for TB tests and that we could just remove those needles to use as an oral syringe. She offered to mail us a couple but I told her we were going to be down the hall from her office for Elise's speech therapy the next day, so we would just stop by to pick them up. That day came and Elise's nanny stopped by the office. The office staff gave her two 5 ml oral syringes. The nanny knew these weren't correct and asked for the smaller ones. The staff told her that she'd have to wait until they could speak with the doctor. She was unable to wait because she has to get home to take care of the boys (hubby and I both take late lunches on Elise's speech day to cover childcare between us for the boys, so time is tight that day). To end this long story, I e-mailed the doctor again and she will supposedly have the correct syringes for us when Elise next goes to speech on Friday. Of course, this means we've gone yet another week without being certain that Elise is receiving the correct dose. Even the simple things are difficult lately. Last time, I obtained a 1 ml syringe from my dog's vet's office. They were very accomodating. I don't know why pharmacies and doctor offices are so guarded about sparing 2 of these. I mean, I wonder if I just said that I need them to ensure I shoot up with a clean needle, if I'd be issued them without question. Of course, child services might then show up the next day - there's a flip side to everything.

I guess this has been a big complaining post. We're just starting to skirt the downward slide again. I'd love to see some positive noticeable improvement from Elise again. However, the progress has leveled again and with the increased stimming, it seems like she's somewhat going backwards. That said, we have been asking a lot of her lately. We took her to a few different Halloween events that were crowded and crazy. I guess we're lucky that she can handle attending those things, even if it does overwhelm her and cause her to want to retreat into her own little autism world.

Oh yes, I'm fully recovered from surgery but I still have very similar debilitating pain 1-2 times per week. Seems as though it's still biliary colic. I should go visit the doctor again, but I'm managing to keep the pain at bay with the leftover painkillers from the surgery. When an attack suddenly starts, I take one and recover an hour later instead of continuing in pain for 3-4 hours. It's working for now.

All of these hassles and complaints pale in comparison to what my aunt is going through right now. I know you read this blog and I want you to know that I am thinking of you and praying for you.