An overdue post

Cupid bow lips, what a lucky girl. I had a hard time getting a picture of her today, she kept on moving away, ducking her head, or the pictures were blurry.Don;t you wish you could capture who your children are and how you see them daily, the surreptitious grins, the sly smiles, the coos and the giggles? Amanda is such a complex little girl, but I am frustrated in trying to get her on film, I hope you enjoy the images I managed to get the past few days.

My sassy little lassy. She is opening up every day, she still withdraws into herself, but we can see the feisty and sweet little girl emerging more and more every day.

On her favorite toy right now, I watched her try her best to climb on by herself the other day. She was standing up and every time she placed her hands on the dogs head, it would rock and she would startle and back off. After a few minutes of trying and failing, she slapped it and kicked it out of her way. Mommy came and helped her on, showing her again how to get on by herself, I have a feeling she will be able to in a few more weeks, she is determined! Yes, she is drooling, she is getting two teeth.

Sitting with mommy, and yes, I did not want to be in the picture. Look at her hair! It all grows forward. I have been putting it up in a ponytail, but this one is without it. Still my little buttercup, but less so. LOL

This picture came out red, argh, the flash did not go off, but I could not delete that precious expression, so greyscale here we come. Isn't she precious?

How is that for a face, goodness, Amanda should be in movies, she has so many expressions, she always makes us smile.

The orthopedic doctor will evaluate Amanda tomorrow; we have completed her school evaluations and are awaiting her IEP. Sadly I could not meet when it was convenient for the school (7:30 AM tomorrow, hum, no way, it is just me and the girls and no way to arrange it that early) so I am not certain when we can do it. I think I will be signing paperwork giving them more time, by AZ law; they must complete her IEP within 10 days of her evaluations.

I am frustrated with the special needs-special education system, and things are only getting more complicated. My friend Kathy keeps telling me to get "Negotiating the Special Ed Maze", but when do I have time to read it? I have 10 books here about Down syndrome (Woodbine House), and can read two or three pages at most. This weekend I am attending a Down Syndrome Connection meeting most of the day Saturday, sadly, not about education. I am planning to attend the Wrightslaw meeting her in March, and it is about special education, so I am hoping that anything I am rusty on will be reinforced and it will help me advocate more effectively.

Seems I make everyone mad with my not so insane demands and honest questions, nothing-new there, I excel at irritating and angering people, I ask too many direct questions, makes folks wary of me. According to some parents, it means I am advocating for my kids, but I do not enjoy the contentiousness of it all. Moreover, the people I ask the questions of rarely answer me truthfully; I do not like the ambiguity of the responses I get from them.

The girls SC came over today to get me to sign some paperwork for Amanda’s OT sessions. It seems Amanda will receive weekly OT and feeding therapy for 3 months. After which time they will decide whether she will continue, but it is likely they will hope I learned enough to do it alone from that point forward, it saves them money you see. I asked, "Do you think you can place a time frame on such a thing, Amanda's needs are complex, I really feel an expert should be addressing her needs for a while". The answer to that? "Well, you know, she is over three and the school should be providing this therapy for her, not ALTCS". That was not an answer to what I asked, was it? So I say, yes, I understand that, but it was determined that she cannot function in a school setting at this time. Her reply “Did you get that in writing, I bet you did not, they would never put that in writing” it goes on and on, and left me with a sour stomach and this headache pounding in my temples.

Every time we learn the rules, they are changed, and I said I believed it was to keep parents off balance, so we could not effectively advocate for our children. The answer? Nothing, she said she would not get into a political discussion with me. I am so frustrated and feel like punching something, do they do this on purpose, or maybe they are hoping we will give up and they can stop dealing with us as often (they do have to complete paperwork quarterly). My girls are too important for me to be defeated so easily, so this conflict will continue for a very long time I am afraid.

Is anyone else nervous about what may happen to special education with Obama in office? We know our new Governor Jan Brewer (Our old Governor, Janet Napolitano will be new director of Homeland Security...) Governor Brewer has already indicated she will balance our budget in AZ , and this means cutting funding to existing programs. It is belt tightening time in government (bet they won't take a pay cut though) this will likely include funding allotted for special Ed services. According to the SC, things are only going to get worse for the girls and their access services. (which the school is supposed to provide, so why aren't they, and you should .......)

I think I will stop thinking about this for the rest of the night.

Trying to walk?

Amanda loves her Daddy, she will not let him sit down unless she is sitting with him! She also does something else for him that she will not do for me; she stand up unsupported. Last night she stood up and took a step. Daddies face showed his pride in her, and Amanda was so excited. Her problem is, she lacks strength in her little legs for walking, they were quivering while she stood there. She needs PT so badly, I hope one calls soon, we have waited 5 months for Kara to get one too, I suppose there are not any in town right now, otherwise, surely we would have one by now.

I need to get over to John's office, no Wendy, I did not completely forget, sorry not enough hours in the day lately/ We will get the pony rider and seat for Amanda next week. I think it will be what she needs to develop strength in her legs. I think this looks like something to motivate her too, see image above. We believe that Amanda is feeling left out since Kara began walking, and this is why she is trying so hard. She really is a jealous little girl lately, and has been kicking Kara and hitting her, uh oh!

I forgot to mention that her dental exam and x-ray showed no issues, the dentist said she may just have issues with her gums like so many kids with Ds do. Well, you know I hate it when doctors generalize about my kids (or folks with Ds), so I will keep a close eye on Manda Moos teeth and gums, I think something may be going on.

Update on Amanda

I realize I have not said much about Amanda lately. She has so much going on and is so busy; she leaves me with little time to sit down.

She has been home almost 6 months (January 10). We had to send in her very first post placement report, she was adopted June 25, and so the report was due Christmas day, it was a little late because of that.

I thought the questions were difficult to answer because they assume the child can talk and let you know who they love and how they feel about things. Obviously, Amanda cannot tell us this verbally. So we discussed her behavior towards us, how she reacts to certain situations, what foods she likes, and we made a supposition about various things.

Amanda adores two people, mommy and daddy, she tolerates others, but if she has a choice, she will sit with mommy or daddy, and though she is curious about other people, she does not look comfortable interacting with them. Do we think it means our sweet girl has bonded with us, yes and no. I do think she is beginning to trust us and is comforted by us when she is sad or hurt; but the bonding process is continual with her (and Kara). I have read two blogs today by other adoptive parents and they say much of the same thing. I suppose the term “Work in progress” would apply.

She does not like to be left alone indoors; she will seek us out and stand next to us asking non-verbally to be picked up. Her giggle or sigh of delight when we raise her into our laps is priceless, I have to try to capture her coos and giggles for the blog. If she is outside, she will sit in the sun and just bask in it. I don’t suppose she was able to do a lot of that in Estonia. I have to remove her from it because she will sit and sit, non-moving, just watching the dog run back and forth, giggling at Kara and Meghan, and trying to catch the cats tails as they dash about. She continues to drop her head periodically, she will breath deeply if she is stressed or tired, but she does not avert her eyes as often as she used to.

She continues to scoot on her bottom or skirt crawls (one foot, one knee) to get around. We have to dress her in jeans most of the time because she ruins her clothing if we do not. We need a smoother surface outside; our cement is rough. She is learning to climb up on things, and this is a new thing, we sit still and let her crawl into our laps, she used to try and give up and we would help her, but now, we sit on the floor and wait for her to make her own way. Just this afternoon she sat on her stool all by herself!

I think she seems older than she did when we met her in June, more like a toddler and less like a infant. She is finally trying to drink liquids, just a few sips at a time, but it is a remarkable improvement, she sucked some juice up in a straw two days ago. I think it surprised her too. We squeeze the box so the juice moves up without any suction from Amanda.

She is not interested in self-feeding, cannot chew anything YET, we do not give up easily, but she definitely has an aversion with anything harder than overcooked pasta. We have done hand over hand spoon-feeding with her, it confuses her, she gets alarmed, and pushes to spoon away, she grabbed the spoon once and threw it away from her. She is not ready for this yet.

VENT: Our insurance denied our claim for Amanda to see a feeding specialist, they also said she did not need a developmental pediatrician, and suggested that her regular pediatrician could handle all of her special needs. We expected this and ALTCCS (Arizona long-term care) will hopefully cover this now, with AZ budget cuts, that is not a certainty either. Both doctors’ offices were closed until this week, so I am making calls tomorrow for appointments. I am very disappointed with AETNA; they cover so much less than our previous insurer United HealthCare. We pay so much for this insurance too, nearly $1,600 a month, so you would think they would cover more. It is so frustrating to me. WHY do they cost so much? You know the denial letter actually said they needed to make sure their stockholders got good returns; honestly, I do not think people should make money off denied claims; it is disgusting to me. I am hoping something positive will occur where this insurance-HMO mess is concerned. We are so lucky we can afford insurance, but it makes it hard for us to have any extra left for savings. OK, I am done venting.

As the picture shows, Amanda loves to push the glider; she will do that for 20 minutes if we do not redirect her. She will also go into the playhouse and shut the door. When she is in there she will go through her litany of self-stim behaviors. She hides in there to do them because we redirect her when she does them in our presence. Are we doing the right thing? I suppose some will say no, but Amanda’s self-stim are very loud vocalizations and it is hard for anyone to do anything when this occurs. She is now saving them to tell us she is hungry or tired, and we are working on helping her tell us this via sign language. So far, she seems uninterested in sign, she has done more a few times, so it is going to be a battle with her, or maybe she is not ready for this yet.

She loves to grab the collars of our tops and rip them, some stretch and she thinks it is hilarious when mama shows the world her bras, ugh. She likes to pull hair and attacks Kara especially, but Kara usually starts it. Amanda is learning to fight back, somehow I think she always knew this, but was too afraid at first to do it. She has learned a high-pitched scream and practices often...she does not allow us to do much as she is very demanding when it comes to attention paid to her. She takes off her shoes as fast as we can put them on, she does not like to be naked and screeches until her clothes are on. She gets cold easily and we have to put thick tights under all of her clothes. She loves to wipe her boogery face on our clothing and usually does this right after we change to go somewhere. LOL

This is not to say that she isn’t the most adorable little girl ever…she has the cutest little voice and when she hugs us, she sounds like she is in heaven! Her giggles are also so sweet and full of life. She does not think beyond her needs being met. It does seem like she is self-centered, I would expect that out of her right now. She needs to be to survive; all of us do to an extent.

Overall, I feel she is making good progress, the fact that she prefers sitting in our laps to doing anything else means she wants to interact with us, and that is a huge change for her. I do think she did act lovingly towards her nanny in Estonia and it was her fear of us as new people in her life, in being in a new home and hearing a language she did not understand, which made her withdraw into herself. I do believe she was left in her crib too often and confined to that small space too much, her behavior shows this clearly. It is not unusual in an institutional setting.

Neither Tom nor I will say that no, she does not have an autism spectrum, the changes in her behavior are subtle, and people who do not see her regularly do not see all of the positive changes as clearly as we do. When someone new enters our home, she clams up and they do not see her true self, so it leads me to believe that we did not at first either, BUT she does tend to prefer her own company to ours 50% of the time.

Only more time will give us a fuller understanding of who Amanda truly is. Just like Amanda, we are adjusting to our new lives with her in it. Last night I watched her sleeping in her crib and felt my love of her course through me. There is no doubt that we love her, and I think she knows it!

She just stood up to tell me it is time to leave the computer. I hope this is coherent, Manda was singing her unique song the entire time I was writing it and I lost my train of through often. LOL

More pictures of Manda Moo

I forgot this from Christmas day, doesn't she look beautiful, truly one of Gods precious angels.

Ah our little Moo, she makes us laugh, she is smiling, playing, and laughing, and sees the camera, and you get this face! LOL

She came over to me after Daddy finished giving her lunch, and I took her picture a few times, looked down and saw how dirty her face was, something daddy tends to forget! I washed it off and apparently missed a spot. tee hee

Can you see what Amanda is getting in this picture? Yepper, a double chin! Seems she is gaining weight after all, so there OT and your feeding specialist, who Amanda will see in January anyway, she does have issues moving food with her tongue and getting it to the back of her throat, and though she is accepting a straw and some liquids, she still does nto drink anything.

I am weary of specialists who know little about adopted children. I know there are adoption specialists out there, but guess what, not in AZ, figures huh?

This picture cracked me up, what a look I got from my precious, and very sweet little girl! It seems contrary to her personality!

Couple of pictures

Good news, Amanda is less yellow, we are making sure to cover all the colors in food to balance her out. LOL It is sticking around her nose though, weird! Click on her picture, the glints in her eyes are shaped like stars! I think we can say that Amanda is 100% starry-eyed.

She woke up yesterday and it looked like we curled her bangs, she sleeps with her head between her feet and it probably pushed them up when she was sleeping.

She has a slight cold, all of the women in the house have a cold. It does not seem to bother Amanda, she is her usual self.

Now she LIKES the bathtub?

I heard pounding in the bathroom and ran in there, Amanda was standing by the bathtub wanting to get in the tub, so put her in the empty bathtub and let her play. You can see what she does in the video, she was trying very hard to tell me something, you can see her, I imagined she was asking to take a bath, it was the quirkiest thing.

She sure is a funny little girl, and you can really tell she feels better. Check out her silly video. Oh, and yes, our bathtub is OLD, original to the house ...it is pretty ugly. LOL

Doggone it :o(

Sweet Amanda, she is such a character and we feel really bad about not giving her pain medication for her dental pain all these months. all of a sudden she is energetic, happier, and affectionate. Sadly we think she has been in pain this whole time from her cavities. :o( Poor baby!

A long Wednesday-and happy to have it behind us

You can see Amanda's band aid, this is where her IV went in.

We are so grateful that Amanda did well yesterday.

Neither of us enjoy these dental visits, having to hand our precious girls over to be put under is scary and stressful and we have to be brave for them, so they are not scared. I barely manage that.

We took Amanda in early, there was a cancellation, and we sat in the waiting room until the time of her original appointment. Figures huh? They weighed her on a regular scale and asked me to get on to be weighed and then hold her, you know, the scientific method. LOL I made DH do it, I hate getting on scales, I have not owned one in years. That is another story though.

We waited a little bit more and then one of the assistants came out to get Amanda.  I don’t know why I am the one who takes the girls in, because it is so hard for me, but I always do it anyway. I picked up Amanda and we followed her to the back.

The first thing that I encountered when I went through the door to the back room is that dental office smell; it has always made my stomach turn, bad memories from childhood? The dentist we saw as children was brutal. So once I adjusted to the unpleasant smell of the office, I took Amanda to the same dental chair I had taken Meghan to just a couple of months before.

The anesthesiologist; a very kind and gentle doctor, (he had been there for Meghan previously) came in with the pre-op shot and when I saw the syringe, my heart began to beat faster. Poor oblivious Amanda was facing away from me while the doctor tried to find a muscle large to give her an injection in. He mentioned that Amanda had very small muscles, it was no surprise to me, she is so little. He gave her the injection in her tiny deltoid, ouch, and she began to tremble and finally cried, poor little baby, it hurt her arm and her feelings, but what can you do about it, shots always hurt. :o(

I cradled her in my arms comforting her and giving her kisses on her forehead and I watched her carefully while the sedative took effect, first her arms went limp, then her legs, and finally her head lolled to one side and her eyes lost focus, this all within 2 minutes of admission. I felt so panicky, and God help me, but it reminded me of putting my beloved cat Lancelot to sleep and I felt so scared that I was losing Amanda too. I tried to see if she was breathing, I could not tell if she was and everyone was gone from the room but me, I was scared and was breathing so hard, my heart pounding in my ears, that I had to hold my breath to listen to Amanda’s lungs. I held my head to her chest, feeling for her breath on my face. I heard her exhale and was finally able breathe myself, but I was still concerned that the narcotic had depressed her respiration too much and I walked around holding Amanda trying to find someone to help. (this took place in a very short time, but panic skews reality, slows everything down to a snails pace). The doctor finally came back and told me to lie her down on the dental chair, I gently placed her there; her body limp, appearing lifeless, and I fearfully asked if she was she OK, and he said she was fine, just sleeping. However, with her eyes are half-open, I was alarmed.

The doctor told me that I could leave; and Amanda would be fine, so I reluctantly walked back to the lobby fighting back the sudden tears that welled up in my eyes, I opened the door to the lobby and saw Tom and the girls waiting and when I sat down, I the worried tears began to flow. Tom came over to hug me; he knows it is hard for me to witness the girls being sedated.

We both picked up magazines while Meghan and Kara played in the playhouse, and talked about movies coming out and inconsequential things, anything to take our minds off of Amanda, but we failed miserably. I closed my eyes constantly and prayed she would be safe, I know anesthesia is never to be taken lightly, and even though I had 6 surgeries, (31 hours total) and I did fine, Amanda was not my biological daughter and I knew nothing about her family medical history. I did not know what to expect or how she would react to the drugs. I could not help but be afraid for her.

After 45 minutes, I was feeling frantic, and began to get up and peer through the broken window to the door to the surgical suite. After an hour, I finally asked if everything was OK, and they said Amanda was on her way out, 10 minutes later they carried her into an exam room and laid her down on there. The anesthesiologist tenderly placed her in a side lying position and told me she did great, no problems. The dentist came in soon after wards to tell me what they did.

He did all the work they had feared she needed done, they do not do the x-rays until the children are under sedation, so we were not certain if he could save her little teeth or not, some may have needed to be pulled.

A big concern was whether her bruxism would loose the upper front crowns, he said if she was a side-to-side grinder, they would be fine, but front to back may make them fall out. I believe she is side to side, but her little mouth is closed when she does it, so I am not certain. I am hoping for side to side. He told me to be very vigilant about keeping her mouth clean.

Amanda slept soundly while the dentist spoke to me, he asked about her size and development, wondered if she was getting better since he saw her last.

I called Tom in after that, he brought Meghan and Kara in the small room with us, the double stroller half in and half out of the room. Kara was sounds asleep; looking huge in the back seat, she is HUGE; we cannot believe how big she is getting.

The doctor (anesthesiologist) came in to try to wake Amanda. He pinched her trapezius muscle repeatedly, more likely he is compressing the spinal accessory nerve plexus, (think of the Vulcan Nerve Pinch in Star trek, yes, I love Star Trek, but have never been to a convention…). Amanda she did stir, but would not open her eyes all the way, so he left to work, and said it would not be that much longer. About 15 minutes later he came back and managed to awaken her somewhat, he said we could go.

We put her in the stroller when we got home, she had no control of her neck muscles and her head kept falling forward. She stayed there 30 minutes or so and then tried to climb out, we knew she was feeling more awake, but another issue presented itself very quickly. Amanda was in pain, she kept grabbing her mouth and whining, she was so sad and began to sob, I held her, Tom held her, she scratched us and pushed away and we could not do anything to help her. We could not give her pain med's yet, she could not make her tongue work, it lolled out of her mouth, useless at that point. We had to wait for her entire body to wake up.

After a few minutes, we thought she would be happier in hr crib, but that made her cry more, so I held her like an infant and gently bounced and sang to her, she finally calmed down and let me snuggle with her. We could tell she was not used to being held for comfort, it made me sad, and I hoped that she would learn that it was OK to want comfort when she was hurting. I know orphanages do not have time to cuddle infants when they are sad or scared; it is heartbreaking to sit in an orphanage and hear hysterical babies hiccuping on sobs. You want to go to the back and pick up the babies, but you know you can’t. I tried to imagine being the caregivers there, and them knowing if they held a baby one day, the next day they may be too busy to, and it may make it even worse for everyone. Still, it is not an ideal situation, and this is where attachment issues begin for many children. Sorry, off on a tangent.

After Amanda was fully awake in mind and body, we gave her a tiny bit of water to drink, she can’t drink liquids well. We gave her a pain reliever ever so slowly and she was almost her old self 20 minutes later. I got to cuddle with her until it was time to go to her sisters Christmas choral concert. She did really well, I thought she may get fussy there, but she actually tried to sing with the chorus. She is indeed an Estonian; they also treasure choral music. I heard quite of bit of it staying next to the Soprus Theater.

Julia singing in one of the groups, she is in black, bottom row, second to the left.

After we got home, Amanda was finally hungry, so we gave her some food and got her ready for bed. She gratefully went to sleep; she had a long day.

Since I had been up since 2 AM the night before, I thought I would sleep well myself last night, but a nightmare awakened me; I had a dream Amanda and Kara drowned in the bathtub, I saved Kara, but Amanda was gone. I woke up screaming NO, and could not go back to sleep, of course I checked on both of them, the dream left me feeling unsettled, I knew I was up from that point forward, at least is was past 4 AM by then.

I can chide myself now for my silliness surrounding dental visits, but sedation of my children will always unnerve me. I know I have a fear of losing my girls, to me they are an incredible gift, as cliche as that can sound to some folks, and I am afraid that someone so precious, so special, cannot be with me forever. I have been working on that fear since we brought Kara home, I continue to feel that by adopting another child with Down syndrome, I am being greedy, hoarding them as a miser does gold and other prized things, sure it sounds strange, but is a recurring thought I have. I know that both girls also received the gift of a family, but I feel that we got so much more; we have them! I think another adoptive parent can understand my amazement over having two new children, but many folks just do not "get it" However; my fear is something I have to work through with introspection and prayer; I know it is not rational to feel this way.

Tomorrow is the day-please pray

Finally getting those mean old molars worked on, one bleeds all the time when we brush her teeth.

Click the link below to read about her dental issues.

http://ukiestoniamomto8.blogspot.com/2008/08/poor-mandy-moo-has-some-bad-teeth.html

Amanda is going in for her extensive dental work tomorrow afternoon. She can't anything for 6 hours prior, and goes in at 2:00 MT. That means she cannot eat breakfast. They say I can give her juice BUT, she can't drink clear liquids, so she can't have anything, poor baby.

Please add her to your prayers, she has to be put under, and anesthesia is always risky, I am getting increasingly nervous and need to calm myself too, she needs me tomorrow.

A call from the OT

She called today to see if I had the numbers she needed. I decided to face the situation and tell her how our last meeting made me feel. Interesting that she had no clue where I would get the impression she was blaming me for Amanda's delays. I repeated back her words to me and she said she did not mean it that way, she said of course she knew Amanda had only been here a short time and she would still be adjusting, BUT she never said either of those things to me when we spoke.

I am still upset with her, I realized how much so when I heard her voice today, she did say she felt bad I misunderstood her, but I did not feel that she was sincere. It seemed more of something she HAD to say but did not want to than something she actually meant. She kept telling me that I could make complaints to her supervisor, and I told her, I would prefer to speak to her and work it through between the two of us, though she seemed very reluctant to do so. Maybe deciding I was one of THOSE parents you know.

I called Child Find and our SC after talking to her the first time and both said they could not discuss Amanda with her because we did not fill out the release allowing communication between her and them. I am not certain why she needed to talk to either; our SC said it was unusual for an outside therapist to talk to her and all she gets are reports after the fact, usually from the family. She also said any communication without the release was against the law anyway.

I did get a third call back; the OT said she would send the pediatrician and me the report with her recommendations. She seemed a little less tense, less curt. It was not easy to say how she made me feel when we met, but maybe she will try harder with the next family she meets with. I do not require that they like me or become my friend, but I do demand respect and professionalism. It would be nice though, if the professionals we met up with would try to stay warm and open, some seemed so emotionally cut off.

She is recommending that Amanda have in-home therapies because new places frighten her so much. We are getting the names of feeding specialists, a neurologist, and we already have her pediatrician and her orthopedic doc. Not sure, what else she will recommend.

The issue with her request will be DDD and ALTCCS will not want to pay for therapies that essentially are the schools responsibility, but since the psychiatrist recommends Amanda stay home until next August, we cannot get school therapy unless we take Amanda in to the school, and we are back at the "New place makes her shut down" issue. The school can send someone here, BUT TUSD is hurting financially and I do not think they would spend the funds on Amanda, I do know they would not have anyone available for quite a few months, and Amanda needs help now.