Monday, December 29, 2008
Tuesday, December 16, 2008
Monday, December 8, 2008
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
Sunday, December 7, 2008
Thursday, December 4, 2008
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.
Tuesday, December 2, 2008
Click the link below to read about her dental issues.
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.
Monday, December 1, 2008
ESFP - The Performers
The entertaining and friendly type. They are especially attuned to pleasure and beauty and like to fill their surroundings with soft fabrics, bright colors and sweet smells. They live in the present moment and don´t like to plan ahead - they are always in risk of exhausting themselves. The enjoy work that makes them able to help other people in a concrete and visible way. They tend to avoid conflicts and rarely initiate confrontation - qualities that can make it hard for them in management positions.
Friday, November 28, 2008
That sums up the attitude of the woman we saw today. She wanted to know, "WHY CAN'T she walk yet”, "Why is she so skinny" "Why is she so delayed" She said this with a raised eyebrow and a look of distrust and dismay, as if something I did prevented Amanda from reaching those milestones. You know how it is though; you want to give folks the benefit of the doubt, so at first you shrug off these statements. I already told her, Amanda was adopted and had been home less than 5 months.
She asked me why Amanda could not drink from a cup, I told her how they fed Amanda at the orphanage and I repeated she spent many hours in a crib and she had no early intervention therapy, her response, "She needs to see a neurologist, nutritionist, and a developmental pediatrician immediately, something is terribly wrong with her." I thought to myself “REALLY? I HAD NOT NOTICED”. (Oozing sarcasm) I told her that was why we went to Child Find; to have her evaluated so we could begin to get services for her, she said, “What do they have to do with that, Down syndrome alone is enough to get services.” Excuse me; but nothing is further from the truth, I wish it were this easy. Apparently, she does not know that in AZ that is not the case. The CHILD, even with Down syndrome, has to have specific mental and physical delays before they will get OT, PT, and ST, or qualify for ALTCCS. WHY wouldn't an OT know this, she should. So she says, “Has she had a DDD intake yet”, I say of course I say, three days after we got home.” She repeats, then why are you just now seeing an OT for evaluation. Hello? You called us when you had the first opening, and that was on Wednesday the 26th of November, TWO DAYS AGO, almost 5 months after you got the referral. She says, "Well sometimes it takes a year to get in here", but she is asking me why we are just getting in there, is she on drugs? Grrrrrrrr, in addition to that, we HAD to get her evaluated by the school district first, to determine her delays; it is the school districts responsibility because Amanda is over the age of 3. She says “Why, why them, are they qualified, I need their names”. She had already said she knew who Child Find was, but her questions said she did not.
"Did you know she was this delayed when you adopted her" hum, yes, we did spend 18 days with her before she came home. "What is WRONG with her?" well lets see; she has Ds and Anirida, and she lived in a special needs orphanage all her life. "what is aniridia, I never HEARD of THAT?" "What was it like in the orphanage?" So I tell her what aniridia is and say; Hey, we have no idea what the orphanage was like, we were not given a tour, and in fact, all we saw was a small kitchen and a living room. We did not see any other kids, we did not see Amanda's room, her nanny, her groupa, and we saw no one but two caregivers. we know very little about her family, we know very little about her life before we brought her home, she simply says "Well, why don't you know?" (You see why I am getting hot under the collar now?)
She was treating me as if I was lying about who Amanda had seen and what we had done for her, she implied we were not feeding her enough food even though she has gained 3 pounds. The energy coming off her was disdain and distrust. Little by little, I began to feel angry at her questions and her implying I was not feeding Amanda well, and was not being a good parent to her.
When we take our precious girls in to an evaluation, we are looking for answers, for someone, a professional, to help us help our new children. We need them to be helpful, patient, understanding and kind, everything this young woman was not.
The OT could not fathom Amanda’s life before she came home, good orphanage or not. It was not a loving family who took care of her, she did not get the therapy she needed to be stronger, smarter, healthier, as much as they may have loved her in Estonia, and I hope they did, she did not have a mama and papa. It makes a difference, and if they want to label Amanda failure to thrive, fine, but SHE IS NOT, she is thriving, growing, changing, and damn it, the paperwork The oafish OT had was from July 18th, right after we arrived home. As far as I am concerned, anything written then is no longer accurate.
Tuesday, November 25, 2008
Well, according to the folks at Child Find, that is her developmental age. We just got back from her evaluation, and yes, I agree with them, Amanda is very delayed, she can crawl and sit up, so she does have motor skills that are beyond 4 months, but in everything else, yes, she is very much like a tiny infant.
Amanda came out kind of yellow in the original of this picture, so I did a color correction, check out her eyes, LOL, they are grey blue normally. :o)
I am happy to say that for the very first time since we came home with her, Amanda sat in the tub and did not cry in terror. She even splashed and actually enjoyed herself!
Small but very rewarding steps.
Sunday, November 23, 2008
Tuesday, November 18, 2008
I am certain we will address her lack of mobility at her Child Find appointment next week. She is severely delayed in motor skills.
I cute her hair a little bit, trying to keep it out of her face, I will be glad when it is all one length and I can put clips in it. Or little bows, maybe even pigtails?
Saturday, November 8, 2008
Sunday, November 2, 2008
Reece's Rainbow began their Angel Tree program on the 1st of November. Since 2006 this has been a major fundraiser for this Down syndrome adoption charity.
Friday, October 31, 2008
Tuesday, October 28, 2008
Monday, October 27, 2008
Sunday, October 26, 2008
The mouth is the interpreter for the heart.
Considering my feelings lately when it comes to the unkind things that folks say and do; this proverb speaks to me. My reprimand for saying how I feel is to be ignored absolutely and completely by people I thought were friends, people who I helped when they asked for it, not expecting anything in return except their friendship.
I had a couple of folks come to me upset about something and we talked about our feelings, I have never heard from either one again. It saddens me to think they were on a fishing expedition, or they did not mean what they said, sadly it appears this is so. I suppose it serves me right, I was not all that kind about the situation, we reap what we sow.
The mouth is the interpreter for the heart.
I wonder when these folks decided to get information from me, did they tell themselves that is was for the greater good? Did they consider how it would affect me and my family? Nothing else illustrates how a person feels about you that when they do something this unkind to you.
I think the absolute worse expression of this was leaving comments on a blog and having it removed, not once, but three times (different comments, all benign, things like: I am happy for you, or what a cute picture) It was giving me the message, I was not welcome there, and I no longer read the blog. How sad, but by words and actions of others, I got the message, you are not one of us and we do not care to be associated with you.
The mouth is the interpreter for the heart.
Does it matter? I believe it does, I think folks do and say things in cyber land they never would in a face-to-face encounter. Awfully cruel things, wounding things. I love my Internet friends, I cherish their friendships, but I do not cherish the pain they cause when they punish me for saying how I feel. They not only turned away from me, but the children I adopted, and my precious little girls did nothing wrong. I suppose I deserve that for not toeing the line, for being different, I suppose it makes it OK, and it is such a Christian way to treat me and my family.
The mouth is the interpreter for the heart, and actions sometimes speak louder than words, thank you, all of you who decided we were unworthy, for letting us know how you truly feel about us.
A sincere thank you to those who love us regardless, we love you too.
Wednesday, October 22, 2008
We sure get a lot of attention when we go places. Inevitably I am asked if the girls are my grandchildren, makes me feel like I am 60, actually, it makes me feel really bad, but that is vanity speaking, isn't it? I still cannot believe the woman looking back at me from the mirror is me, I do not recognize her.Anyway, back to topic, I always tell them the girls are my daughters, then they ask if they are adopted, I say yes, two of them are, the oldest is homegrown. I like the looks on their faces, shame on them for assuming huh?
The ladies at Child Find are very sweet, funny there is not one man working there. Kara went to Child Find in April and again in June, they were all amazed at how much she has grown, we are too. They thought Amanda was just precious, and of course we do too. We turned in her paperwork and she has another appointment for the official evaluation at the end of November.
Meghan went through the office closing doors...I am telling you, this week is not a good one for her. I don't know why, but she is being a peel.
Tuesday, October 21, 2008
Friday, October 17, 2008
Then there is childhood cancer, and a very thorough mommy who read all about Wilm's tumors and the chemotherapy and radiation given for them. Oy, saying I prayed before bed, when I woke up and at stoplights is not exaggeration.
We had to wait for 35 minutes before they called us back. We got a very sweet technician who was kind and gentle with Amanda. Amanda was trembling in fear and I was holding her hand and soothing her, she calmed down in about 5 minutes, I think because the technician was so sweet to her. (no this is not Amanda's kidney, I simply wanted to share what the image looked like)
She scans the first kidney and I looked intently, it looked like a regular kidney to me, smooth shape, no lumps, bumps, or cysts anywhere from any angle. I could breath, was I holding my breath? So far so good, thank you HF.
We turned Amanda on her other side and scanned the second kidney, still looked fine, but to the right was her full tummy, which looked black, and to the left was her bowels, which looked white, the tech said, because they were full of air, which I know is true, Amanda has a lot of gas. The second kidney looked good, not as smooth as the first, but the tech did not look concerned. She checked Amanda's bladder next explaining that aniridia sometimes is associated with malformations of the urinary system. Amanda does void her bladder in a huge gush, very peculiar, so I would imagine something is up there?
I said I was relieved and was reminded that Amanda would need to come in every 6 months for sonograms of her kidneys because of her aniridia, now I thought they believed she had it, but the medical professionals are saying she DOES have it. I figure they won't know for certain until they do the karyotype. However, her irises are not normal, no doubt about that, so I suppose they do know better than I. Until a few weeks ago, I never even heard of aniridia.
We will know everything is 100% OK once the radiologist reads Amanda's scans.
Amanda thinks it is fun to grab things and pull hard. Like my hair, dozens of times today, my scalp hurts, and we will have to work on this one. Killer grip, yes indeed, she is STRONG! Kara also was the recipient of hair pulling from little sis. I put her on the rocking doggie and she did this, it made me laugh, and she was so proud of herself. I think it is time to trim teh girls hair, it is not fun, they fight us, refuse to sit still and all of us get sad afterwards...
Thursday, October 16, 2008
I know I can use this book for certain, I wish I had it 7 months ago! If you are adopting or have adopted, I think this should be on your must have list.
Seems I have a few books to buy, now if only I had time to read them.
You can buy it here: BUY BOOK
Yesterday after I read comments and thought about my plea for advice, I thought, asking for advice from a very limited view of who Amanda is. It is like the blind men with the elephant being asked to describe it from different points of view. Truly unfair of me, I think my wanting answers to help her ASAP is what drove that. I called autism groups a few weeks ago, and a neuropsycologist and they all agreed, we should wait a year before diagnosing anything, it will take her a while to adjust to her new home and family, a new language, and a completely different life. The neuropsychologist agreed to see us, but she fell ill on the day of the appointment, and since Amanda was also ill, we thought it best to wait until she was more like herself again.
I did not want to hear that we should wait, I wanted answers NOW, but truly, is that fair to ask of anyone? Not really, who Amanda is now, and who she will be in a year is something no one can predict. The positive changes we see in her daily encourage us, I will try to get some pictures, she has so many different smiles, silly faces, and is a playful little girl, but she does not like her picture taken, so it is hard to capture.
I have had wildly different answers to my question, and as I expected, they left me feeling rather inadequate (my issue) and just as confused as before. We made up our minds to treat both Kara and Amanda like infants and allow them to develop though all the stages as an infant does. We have seen that Kara has done this, albeit, very rapidly, in months instead of years, and we felt we could do the same thing with Amanda. Treat her at the developmental age she is currently, which I would say is 6-8 months at this point.
She getting cuddled, coddled, and fed like an infant. She is fighting a cold, and this made her self-stim behaviors increase, but I expected that too, just as a toddler who gets ill wants his pacifier again, or a bottle, or to breastfeed more. They want what comforted them before, and for Amanda, it was self-stim behaviors. She is not used to people cuddling her when she is ill, I am certain she was left in her crib. I can tell by her constantly crawling to her crib and standing to be put in there. She only stays 5 minutes before she decides it is not a great idea, and we take her out and hold her.
I am also a very good reader of body language and know when she has had enough and needs space. I let her have what she wants, she will go off and play and return in 15-20 minutes to be held again. Today she came when she was called and asked to be held. She also signed more food, and said Da when I asked her a yes or no question, makes you wonder what other surprises she has for us. Hopefully more good ones than bad (no more bad medical news for our baby girl please)
She is making progress, we think it is remarkable, the self stim behaviors are trying on our nerves, I have been singing with her and she thinks it is the funniest thing ever, maybe it is the beginning of the end for the self stim (most of them). I thank every single person who gave us advice, each of you gave me pieces of a puzzle that will be easier to solve now. I apologize for not depicting the entire picture when I asked for your help.