God Doesn't Make Mistakes

I got this on Facebook this morning, and after yesterday it was a wonderful video to watch, I was upset off and on about the research issue. I completely agree, with the song in the video, God does not make mistakes, but since we have free will, we most assuredly do.

Yesterday Tom and I took all three girls to a home with us so we could work on the Down Syndrome Connection web page, we met an adorable little girl, oh my goodness, she is almost 4 and greeted us at the door, Kara was the first one in and she said oh so clearly, Hi Kara. None of my girls are great talkers, this little sweetie sure is, and oh yes, she has Down syndrome too. I am hoping we, all the people working on the web page, can get it to the place we want it. Little L's daddy knows his stuff, so I know we are on the right track.

As is typical, Meghan ran to the back with L, they proceeded to dump L's enormous toy box out, argh, I get so embarrassed when my kids do that.Kara bounced on the bed, she is a bouncy girl! She then found a shopping cart and pushed it all over the house. There was a mirror on the wall, at L's height, and Kara walked past it smiling at herself, she adores mirrors. She did that a long while. Amanda came and sat with all of us, first with me, then L's daddy, and them me again. Now I know that wanting to play is emerging, yesterday Kara and Meghan went into the playhouse here at home, and Amanda opened the door to join them too, that is new, she used to ignore them. She also goes in on her own and sits on the Nemo bench in there. Oh, and did I mention it? She took 5 steps to me! 5! She is getting closer to walking!

When we finished with drafting out what we needed on the web page, we went to the store, it is a smallish store and it was packed, so I took just Meghan in with me. Normally she climbs in a basket, but Tom has been letting her walk when he takes the girls shopping, so she walked alongside me and she did great, she even picked out the items we normally buy and put them in the cart. She stayed with me too, my little girl, she is growing up, it happens so fast!I was proud of her yesterday, she used to run away to another aisle when I gave her some independence. When we got back to the van Kara was napping and Amanda was MAD, she wanted to come too. Doggone it, I felt so bad, we just wanted to run in and out really fast, today she can help shop for her sisters birthday present.

Julia went to a concert yesterday, KFMA Day, she loves concerts, even taking pictures for our local bands. She gets some great shots too. She came home last night with sore feet looking exhausted but happy! I am sure we will hear more about it today, she went right to bed!

I wanted to remind you about our fundraiser for our Buddy Walk, we do not care if we make our goal, but we do want to raise something for our Buddy Walk, so far we have no donations.

DONATE HERE

Research studies and children with Down syndrome

Most Saturday morning I catch up with emails, I get a lot from different on-line support groups, one of them is for parents who home school their children with DS.

They were talking about a great reading program for our kids, and of course I rushed over to see it, I think Meghan needs a little more help there. This program www.readamerica. net like many that specialize in helping kids with cognitive issues, is based in England. I am finding that many of the recommended curriculum's for Meghan are based in Britain, have to wonder why they never recommend USA curriculum, hmmm.

Through my reading I came to another website which took me to another one and then to this one: http://www.dsrf-uk.org. Seemed interesting, they were talking about nutritional supplementation and why it sometimes will not work for our kids, and then there was this link:
http://www.dsrf-uk.org/PDF/Nutritional_Supplementation_in_Down_Syndrome.pdf

I was reading through it, trying to recall chemistry and anatomy and physiology class vocabulary and lessons, because it is very technical. If you get upset easily like me, you may want to stop reading here.

They began to speak about the differences in fetuses who had trisomy 21 and those that did not. About a 1/3 a way through the page, I came upon the term "aborted fetuses showed" and my heart sank, of course they were doing research on aborted babies, where else would they get the tissue. At that point tears ran down my face because I know how many woman abort their babies simply because they have trisomy 21. Do they then allow doctor to take their aborted children and use them for research? It is too heart-wrenching to me to consider the truth in this, that they do not take their child and give it a burial, they leave the remains for research? Dagger to my mothers heart. I am just sick over this.

Do we as human beings have so little regard for all life that it is acceptable to abort our babies because we see them as imperfect, as burdens, unworthy to sit at our dinner tables? So it seems to me. When researchers talk about their gains in understanding Down syndrome better, do they always mean using aborted fetuses, babies, children, for said research. I guess I was naive, I did not consider that at all, I thought the research was done with the help of living, breathing people, (some is of course, Meghan particpated in some research here on cognition) and now I know and wish I did not, and now you know too. With a 92% abortion rate in America, it is pretty high in the UK as well, but I do not have those statictis, that is a lot of research material, isn't it. I may vomit now.

Then I am going to hug my three precious girls close and thank God they are here, living, being loved, giving love, and cherished.

Pray for Ruslana

Grab This Button

Please read their blog, and pray often and long for her.
http://www.nogreatergift.blogspot.com/

Would also like to mention

October is Julia's favorite month, it is her birthday month (October 7th) and Halloween, she adores dressing up for Halloween! I means a lot to me too, she was born in October, my first little girl, she was such a chatty little toddler and her vocabulary was amazing! She was and is a smart girl. She is also beautiful (yep, moms are biased, but she truly is beautiful!) She is kind, empathetic, and a good friend. Loves concerts, her Camaro, musicals, singing, digital photography, what can I say, I am very proud of her!
October is also Kara's birthday, she will be 5 this year, I still cannot believe it, she was so tiny when we brought her home, weighing 19 pounds and wearing 18-24 month clothing, now she is in size 4’s! We went to storage and took out a bin of Gymboree (with a few other brands too) for Kara (they were Meghan's who admittedly had enough clothing to be octuplets) One bin has enough clothing for 3 weeks, and there are 7 more there. If you visit me, you know we have girls clothing coming out of our ears, I am not certain I want to take the other bins out of storage. BTW, Kara looks so adorable in Meghan's almost new hand me downs. Today (for my Gymboree friends) she is wearing Romantic Garden! Kara is a stinker; a busy, funny, active, reckless, happy, silly little girl, but she is also very sweet and is now playing with baby dollies. To see her hug them and put blankets on them while they sleep, just too precious. She also throws them, steps on them and leaves them outside where the dog chews on them, but hey, I will focus on the good things.
October is also Down Syndrome Awareness Month and Breast Cancer Awareness month, among others things, but of course those two have meaning to our family. It has been 6 1/2 years since I heard my husband tell me I had breast cancer. I watched the Survivor Movie and it brought back the fear I felt when I had full body scans to check for metastasis, the first was a CT scan, we laughed and joked through that, those gals were wonderful and supportive, my heart was pounding as it crossed over my head and torso. I made a joke when they said my brain looked healthy, normal, after so many jokes about the airheaded blondes, it was good to have proof there was indeed a brain in there after all.

Then came a full body bone scan, this one was bad as the tech was a somber and uncommunicative guy, he was frankly very mean considering why I was there, showed no compassion whatsoever. Ever had a bone scan, if you are claustrophobic, you better get sedated; the scan is 1 inch from your nose when it gets to your head. For me they began at my feet and worked thier way up. When we finally got to my head the techs demeanor changed, he seemed rattled and he kept going over my head again, my goodness, but the fear that leapt into my throat almost choked me. He asked me if I was ever dropped on my head or if I had a steel plate at one time. I realized he was looking at the strange indentation I have on my skull and chuckled. It has been there all my life. Maybe my siblings did drop me, it is likely, but after the scan I learned that many family members have the same defect, it is genetic! Still after all the stress the radiologist took pity on me and told me my scans were 100% clear of abnormalities, meaning, no bone metastasis. Whew, that was a huge relief.

I also had a MUGA scan of the heart to check left ventricular ejection factor, the oncologist wanted to be certain my heart was healthy enough for chemotherapy as Adriamycin (doxorubicin), one of my chemo cocktail, could cause cardiac damage. A scan following chemo showed some minor and trivial heart damage, and I was relieved to hear that.
After chemo, I had a PET scan to make sure I did not have new tumors forming, blood work came back questionable; thankfully that was also clear. I have had three PET scans since chemotherapy. They always unnerve me, but meditative prayer helps me through, I have not had any scans since 2006, when we committed to adopt one and then two little girls and came home with two different little girls, international adoption is sometimes more of a crooked trail than a straight one.

I hope you watched the YouTube video and hope you can understand how much a cancer diagnosis changes a person, a family. So many people tuck tail and run when their friends or family member are diagnosed, so many survivors tell me it is a true test of a relationship, so very true. Cancer scares us, and we do not always behave rationally when it enters our lives. Please swallow your fear and support your loved one, your friend or co-worker through their treatments. If you are a boss; just know that firing survivors because they miss work isn’t just illegal and immoral but demoralizing as well (yes, it happened to me and too many others) I truly believe that one of the best gifts you can give a survivor is your time and your prayers. Talk to them on the phone, take them to treatments, bring them food, be there for them.

Moving on…we took Meghan and Amanda to the dentist for check-ups yesterday, Meghan may have a small cavity and poor Amanda, her mouth was covered in herpes blisters, her gums are also bright red and bleeding. Her dentist said it was her first outbreak, meaning, she just got herpes simplex one. I had a cold sore 2 weeks ago and have to think she got it from me, goodness, I feel so terrible about it. Meghan also had one, we were all pretty sick. I should not have let Amanda give mommy a kiss. She is feeling better today, and ate all of her breakfast,. The dentist said the outbreak will last a few more days, she has been so miserable, but it is good to know why now. My good friend (a fellow BC survivor) tells me that sometimes institutionalized kids have compromised immune systems and often get herpes very easily because of that. She also tells me it gets better the longer they are with your family. Thanks Dede, I hope poor Amanda never gets them as bad as she did this time.

Amanda and Meghan are scheduled for sedated cleaning in January, oh, sedation always makes me nervous, and the last time I burst into tears when Meghan went under. She just went limp in my arms and her eyes rolled up in her head, I honestly thought she stopped breathing. I put my head to her chest and checked for air flow on my face, and even though her respiration rate was very slow, it was there. Do any of you other moms get scared from sedated procedures? I may have Tom take her back this time; I do not want to scare her with my fears. I feel like such a wimp though. If only she would cooperate and let the dentist work, but she gets scared and falls off the table, closes her mouth, she just panics. He did say he has seen many children like her who miraculously change their attitudes when they reach 11 or 12, goodness; I hope that happens for her too.

31 for 21

We did this last year and are determined to try again this year, I cannot do it on all three blogs, so we will use our family blog instead of this one and Kara's and Amanda's LOL.

Every October I think about what it means for our girls to have Down syndrome in America. Now most well meaning folks say the same thing to us when they see the girls, can you guess what that is? "Oh, you are so lucky, all Downs kids are so sweet, so loving" and "You must be special people to have three" I just smile and say thanks and move on...I have given up trying to explain anything to them. Meghan has always been shy, I share that with her, I was a terribly shy child myself. My dearest friend was over a few weeks ago and Meghan hugged her for the first time, now B has been here quite a few times, but Meghan has always been so reticent around her, not sure what is going on in her head, but she gifted B with a hug and it made B so happy. It isn’t because Meghan dislikes a person; she just prefers to assess them before warming up to them.

Now Kara, our jolly and rascally little scamp, she will jump on all our visitors and say hi, she is learning that not everyone appreciates it and is doing it less. Amanda climbs in everyone’s lap, but she drops her head, grinds her teeth, and shows distress when she does, not sure what is going on in her little head, maybe she thinks she has to say hello?
So many people also say that they could never do what we do; that puzzles me until I think about what we do that other parents do not, that for almost 9 years our lives have been about therapies and developmental milestones. That is normal for us, but most parents take their children’s development for granted, I know I did with our first 5 children, typical kids roll over, scoot, crawl, cruise, and walk, and talk on their own and on a good timetable. With Meghan and now Kara and Amanda, we had to show them how to do each thing and then do it over and over and over until their bodies and minds learned to do it on their own. It took work from her (them) and us, and it took time away from our other children, but truly not an excessive amount of time, and often they would help us and do the therapy exercises with their sister while they played with her! Of course they are not here to do that with their two new sisters now. Trying to find a balance between Meghan's needs and the needs of our typical children has always been a struggle.

Besides our three little girls, we have their big sister Julia at home, our sons are grown and on their own. Julia is pretty independent, almost 17, and getting ready to get her license and finally get to drive her brothers (now hers) Camaro. I think that having a sister that needed so much attention was hard for her 8 years ago; it would be, she used to be the only girl and then had a sister that took her parents to doctor’s appointments sometimes 5 times a week. Now she has three sisters who have lots going on. When Meghan was a baby, Julia used to help with her therapies, she colored pictures for the therapists to use for other kids, she was a huge help. Today she is in a musical theater group that includes 8 young men and women with Down syndrome. I think being with these young adults and getting to know them has shown Julia that her sisters can and will have futures too. Sometimes we can get mired down in today and fail to see what lies ahead. It has also been a wonderful thing for us to witness, they love being in the productions and the other students are very helpful and kind to them, Julia says, very protective of them.

We have taken all there little girls to Julia’s performances, and the other children’s parents are also in attendance, but try as we might, we cannot get them to talk to us. There is a new young man in the group and we were walking behind him and his parents to our cars, they saw us but did not engage us in conversation, I admit I was befuddled; I ache to talk to other parents, why would they do that to us? Surely they see us with our three daughters; I just cannot understand their reticence. Does something happen after puberty in our kids that closes off parents to one another?

Today will be a busy one with dentist’s appointments for Amanda and Meghan. I hope they can see Amanda; she has 5 cold sores on her mouth right now. Poor sweetheart slept with us last night she was so miserable. She slept well though, hope it is not a trend; we already have Meghan sleeping with us.

Yes, we advocate the family bed, but Kara and Amanda rock themselves to sleep, even after falling asleep first and being placed in bed, they pop back up and rock for a few minutes, or in Kara’s case, sometimes much longer. No way can a person sleep with that going on.
I believed the rocking would diminish over time, but I am finding out that habits a child acquired and did for 3 years are pretty well ingrained in their coping skills. Their so called orphanage behaviors are hard wired. Sometimes it feels like we failed somehow because being in a loving home did not help them overcome this. Then I think about other bad habits some of us have, nail biting, chewing on pencils, chewing on hair, etc, and I guess I have to cut them some slack? After decades of living with one nail biter, I can tell you, I do not think he will ever stop doing it. I have bad habits of my own too…

I am worried about Amanda though, she is not eating very much because her mouth hurts, but her pediatrician says it is a virus, he cannot help her, for us to treat the symptoms, and doesn't that make you want to scream? All she can eat is yogurt right now; anything with even a tiny bit of acidity hurts her mouth. She managed peas and brown rice yesterday. Amanda is itty bitty; she does not have the weight to spare. It makes Tom and I so sad to see her so miserable. We were up with her at 1:30 this morning, she was moaning and so distraught and we were zombie like trying to console her. We gave her ibuprofen; we held her and rocked her to sleep. She seems a bit better this morning, those small steps are important. We would appreciate prayers for her recovery.

We have been working on getting Kara a communication device, the request has been sent in to DD, hopefully long term care will cover the cost, I doubt AETNA will, but you never know. We are waiting to hear when the specialist will come and evaluate her. Yesterday the girls got in their wading pool for a short time, it is still hot here, but the day went from hot to windy and cooler very quickly. Amanda was shivering in no time, Meghan jumped out and Kara was the last one to exit. She was in there saying ba ba ba ba, ha ha ha, da da da da, but get her out, and she says nothing at all. I suppose keeping her in water all day is not an option, but it does illustrate that she has some sensory issues. That is another evaluation we are waiting on for both Kara and Amanda.

Time for breakfast for all and then homeschooling, I need to check school emails as well, we are having an issue with her Odyssey Math program. See you tomorrow.

Please donate to our Buddy Walk!

It is that time again, our local Buddy Walk is coming up soon, Sunday October 26 from 2-6:00 PM at the DeMeester Bandshell.

Our Buddy Walk sometimes gets ignored by the press, such a shame as it is always a wonderful event with so many families attending. I encourage all of our friends and family in Tucson (and all over AZ) to come and show your support of our girls and all people with Down syndrome.

Please give a little to our fund, our goal this year is $500, all the donations go to SANDS and they in turn support The Down Syndrome Connection and Crecer de Amor, local support groups. Go to the SANDS website and read about all they do for our community and Southern Arizona.

The girls having fun in the pool

Today you are You, that is truer than true. There is no one alive who is Youer than You. -Dr. Seuss, author and illustrator (1904-1991)

Kara, she loves getting her picture taken and then looking at herself afterwards. She was pretty happy yesterday, playing with Meghan, both of them giggling, splashing. Amanda turned her back and looked the other way, no matter what Meghan and Kara did, she would not acknowledge them. It makes me sad when she isolates herself that way.

Silly Meghan, all she does these days when I try to take her picture is stick her tongue out and laugh at me, so I got this picture without her tongue LOL. Meghan has alopecia aerata, in May her dermatologist told me she was failing the squaric acid protocol, she mentioned steroid cremes or injections, but we decided to try to alter her diet instead. We eliminated gluten completely and began to wean her off dairy, specifically the 4 glasses of organic milk she drank daily. We bought some whole grain organic rice milk, vanilla flavored, and gave that to her instead, then weaned her off that to plain organic rice milk. She does well on it. In late August we noticed that her hair was growing back in several places, she has tiny tendrils of new hair all over her head, so we feel we are on the right track with this. I know it is only hair, but it makes Meghan happy to have her hair back. You can see the shorter hair along her temple in the picture below, that is all new hair.

I love this picture of Kara, she looks so sweet, you can almost see her dimples, I do not know if it is her low tone or not, but they do not always show when she smiles.
Amanda just had an off day yesterday, she went off on her own, would not play with the girls at all, barely smiled. When she had feeding therapy she would not cooperate and would not look at Ms R at all. Right now she is rocking on her dog, backwards. We feel like we are making great strides with her and then those days happen and it makes us wonder if anything is helping...frankly, I do think it is, but we can get pretty discouraged. She did clap last night at her sisters Julia's musical theater performance, though she was keening quietly the entire time. She was just so unhappy.

Amanda ignoring all of us, she did not enjoy her pool time yesterday, I think she is fighting a cold, and after the flu too, she also has a few chigger bites, she loves to play in the grass, I guess that is where she got them? I will be glad for cooler weather when all the bugs go to sleep, bugs love her.