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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Tuesday, August 31, 2010

Blood work A-OK

We are left scratching our heads, if Kara's blood work shows no huge issues, why is she so lethargic? It is her innate nature to be a couch kartoshka? I do not feel like it is normal for a young child to want to lie down so much. I assumed her lack of energy was from iron deficiency, and prayed it was nothing worse than that. TSH normal in lower midrange, though I am wondering why the pediatrician did not order T-3 and 4 tests too.

Moms out there, what else should we look at for Kara and should we assume she is worn out from the heat?

Meghan and Amanda's blood work was also all normal, some low end, but normal. Amanda having the highest counts, makes sense, she gets sick less often than our other two little girls.


Monday, August 30, 2010

Down With You

Wednesday, August 25, 2010

Wow, we got an award!

Medical Coding


Medical Coding

I am happy to know that people appreciate our blog. We are
honored to accept our award from Medical Billing and Coding:

http://www.medicalbillingandcoding.org/top_down_syndrome/#T_21_and_us

It was fun to see a few blogs of good friends included. There are so
many wonderful family blogs out there, thanks for recognizing ours.

I think all of us want people to understand that our children are
always children first! Yes they have Down syndrome, but they are
more like other children than different!!

Wednesday, August 18, 2010

Yearly check-ups, plays, school, weddings!!

Everyone seems really busy but me, sure I do mom stuff, but I am not doing interesting stuff LOL.


Our oldest son Fred has been riding 25 miles a week, all in one day, it sounds like a long ride to me, but he says it is not that bad. He called Sunday and told me they took an hour off their time, that is amazing. Wish I could ride along, it sounds like a good workout, but I am not as young as I used to be either, I doubt it would be a good idea to start with 25-26 miles for me LOL.

I am hoping Fred and I can see" Bodies the Exhibition" this weekend, we have been planning to for a while, and it leaves next weekend.


The most exciting news around here came today; our son Terry is getting married on Friday!! He and his fiance' Anna have decided to go to the JOP instead of trying to plan a wedding on a shoestring budget. We are hoping an appointment is available, we will find out tomorrow afternoon. We are not at all certain we will be allowed to go in the office, the website says two witnesses. Tom and I definitely would bring our three little gals, and that puts us way over 2! Plus Anna's parents want to be there too. What can we do? We do not want to miss this very important day either. Maybe they will let us stand in the hallway and participate from there, I do not remember the office being very large. No matter how things turn out Friday (or another day if no appointments are available Friday), we are very happy for Terry and Anna.


We have not seen much of Eric lately, busy time for weddings in the summer, he is the event planner where he works. We saw him and his GF Melissa a few weeks ago and had a nice visit.

Brian is currently in a play, 25th Putnam Country Annual Spelling Bee we have not seen it yet, we are hoping to make it this weekend. The reviews have been really good so far, he said the big review comes out tomorrow or Friday!

Brian comes over twice a week to help us with the girls, it is a huge help for me now too, especially with home schooling. It has been really nice to see more of him too, he is also really busy with work and acting.

Julia is a senior this year, I am still in shock over this, I remember the day the ultrasound showed that I was having my first daughter, the jubilation from the gals in my Step class, and the anticipation of dressing her in PINK, of putting bows in her hair. Today she came home from school with a baseball cap and jeans on, but she also likes pink...

She is still hurting from the car accident she was in January, the driver of teh car overturned and hit a tree. Her knee keeps getting inflamed and she is currently undergoing PT for bursitis and tendinitis. The PT thinks her meniscus is injured, and believes that her therapy will fail and she will need her knee scoped to check for soft tissue injury, I hope she is wrong, I really do.


Amanda has finally decided that drinking water is not all that terrible, I wondered when the incredibly hot Tucson summers would get to her. She does prefer lemonade to water though. We are so excited about her progress with drinking, I have been able to get her to give herself water 5 days in a row now, unheard of a month ago. Now to work on self-feeding, she is still refusing to hold her own spoon. One small step at a time, any bit of progress is celebrated here.

Meghan is growing up, it occurred to me that she was going to be 10 this year, I was not used to her being 9 yet! She saw me taking pictures of kittens and Amanda playing in the pool and said "Take my picture too Mom". She gets so goofy, sticking out her tongue, dropping her head, it is hard to catch her face LOL.

Meghan has been dressing in clothing 3 times too small for her, usually Kara's, which were hers two years ago. Kara is not built like Meghan, Kara has very wide shoulders. Meghan can still put on size 5's in some things, but the other day she was trying to put on a size 5 skirt and could not get it past her hips. I realized her hips were beginning to change, oh no, I am not ready for the big P, I am not.

Her behavior is often baffling, mood swings and inexplicable fits. I do not think even she understands why she is mad, she just is. Oh, but I hate puberty.

We are working hard on teaching her modesty, she drops trow in front of open doors, at the DSC swim party she ripped off her clothing to get her swim suit on, oh my, we had not addressed this before because it had not happened before. It is a daily thing now, when I fill up the kiddie pool; she rips off everything outside too. Yet another thing that may take a long time to teach my stubborn girl.

Kara in the bucket; she loves crawling into tiny spaces and this pink toy bucket is one of her favorite places to sit! Kara has been really lethargic lately, I do not know if it is the extreme heat this summer or not, but I am concerned about her lack of energy.

All three girls had their well child check-ups. I hate to say it; but the doctor is not thorough enough, he did not have us take off their clothing, did not check joints, did not check spines. All her did was look in eyes, ears, listen to hearts and lungs and do BP. When I see my doctor, he thumps on my chest, belly, checks reflexes etc. We think the ped is a nice guy, but we need a better doc for our little girls. We asked him for referral for the ophthalmologist, for hearing screens, and for the wonderful blood work. He asked me what I wanted him to check, (really??) I said CBC to start...then told him leukemia screen, thyroid, sigh.

The gals in the office gave me a nifty sheet for each girl listing height and weight for the visit, and then listed their percentages on the growth chart, the REGULAR chart mind you, not the one designed for children with Ds. I showed the doc the website a few years ago for the Ds charts, I just do not want to continue to tell him what he needs to do, he should KNOW.

I came home and put their height and weight on the charts I have for each of them. Meghan was 25% for weight and 75% for height. Kara was 60% for weight and 50% for height, and Amanda, who gained 4 pounds since last year, was at 4% for weight and less than 1% for height. We have been amazed at how much Amanda has been growing, but apparently she is still way under where she should be!

We decided to get the blood tests over with, Tom and Brian took Meghan back; my nervousness over blood tests makes her freak out, so I stayed in the lobby with both little girls. I waited for screaming and hysterics to ensue, but I heard nary a sound from my girl. She came out of the room with a pouty lip and eyes filled with tears. She ran into my arms and sobbed, poor sweetie, but somehow she did better without me, she falls to the floor and acts awful with me there. Brian said she buried her face in her shoulder and whimpered, they had to stick her twice too.

Tom took Kara and Amanda back after that, I was relieved I did not have to endure their pain but I also felt very badly that it was not me who took them back. All three girls have bruising on the arms. Amanda was so upset last night, she actually cried when we put her to bed. She never cries unless she is not feeling well, usually we put her in bed and she is asleep in seconds. I think it made her sad to have to get stuck with a needle.
I rocked Kara to sleep too, she needed hugs of reassurance, I can tell I am not the only person who cannot stand getting blood taken, I had blood tests every week during chemo and then every three months for 6 years, you would think it would stop bothering me, but I just hate it.

Can you tell how much Amanda comes alive in the water? It transforms her in every way, if she could live in water, I bet she would be completely content. We see her in the water teaching herself to float, kicking her feet, and we wonder, maybe they were wrong about autism, but once out it is clearly present, wish it was not.

If she is not in the water, she is on the dog, she has limited interests. Our cat Harpy loves to bug Amanda, but Amanda is very rough on the cats. They do not seem bright enough to stay out of her way. We have kittens who get thrown like shot puts daily, and they keep trying to play with her.
"But the cat came back the very next day.
The cat came back, we thought he was a goner.
But the cat came back; it just couldn't stay away"

With each passing day Meghan looks more like her sister, I remember thinking when Meghan was born that they would never look alike because of Meghan having Ds, but she looks so much like Julia did at this age. You catch glimpses, expressions, the shape of her moouth when she smiles, well, they are sisters afterall. When your little one is an infant, I think you see Ds more, as the years tick by, you just see your sweet daughter.
Julia 2001, The main difference between Julia and Meghan? Julia has her dad's eye shape and Meghan has mine. Yes, I also have almond shaped eyes, it is a family trait, only Meghan has eyes like mine. That includes the dark circles and baggies LOL. I always had them; bad allergies to my dad smoking, and no, no one smokes here.
Maybe Kara is so tired because she is in her bed bouncing at 2 Am? Squeak, squeak, squeak, and giggle giggle, guffaw. She does not sleep well at night, but wants to nap all afternoon. I cannot wake her up if she falls asleep, she is OUT. Yet I cannot get her to quiet down for bed, even when I keep her awake all day. I hope this is a phase. She is wearing Tom and I out. Right after we go in her room to give her water, a hug, etc, she starts to bounce again.

We finally have a PT to come and work with Amanda, we will meet her Monday. Hey, it is only about 2 years too late... Amanda is very close to being a walker, maybe the PT can help her develop some calf muscles, her quads and hamstrings are definitely growing.
The state is short PT's because of all the budget cuts, AZ is not doing well in many respects. I think our legislators need all the prayers they can get.

Wednesday, August 4, 2010

Feeling a bit more hopeful about school this year




We enrolled all three girls in school this year, online charter, not a brick and mortar school. I was worried about Amanda; she does not have academic skills to speak of and is very young developmentally. What would she get out of school?

Last spring I spoke to the school about our concerns about the current curriculum, it truly had to modified to such a degree that the books were useless. I found myself going to my homeschooling list serv and wishing wistfully for regular homeschooling with our own curriculum. Those parents seem to have the answers, AZVA did not want to listen. I was extremely frustrated.



A few weeks ago we did an interim IEP for Kara and Amanda, it will be in place until October. Because their last IEP was done when they were pre-school aged, they both need to see a psychiatrist to have their eligibility to receive special education services reaffirmed. Some typical children with speech delay often will not need additional services in Kindergarten, though states likely retest to save money, who are we kidding. :P Even though we find it silly, you have to follow the rules right? We have no doubt that Kara and Amanda still have Down syndrome with significant delays, Amanda still has autism too...This gentleman will meet us at a neutral place and evaluate their girls strengths and weaknesses. With Kara he may be able to get a clearer idea of what she can do, Amanda on the other hand will likely go into her "I do not like strangers" mode, drop her head and ignore him. Depends on how friendly or engaging this man will be.



Last month Tom and I "attended"the IEP via conference call with the team, the drafts of the IEP's viewed on an Elluminate screen. Just one of the peculiarities of on-line schooling, all of the team live in the Phoenix area and getting together in a room was not an option.



They asked us if we thought Kara would be able to write her name by October? What? We said no way, they said what about a K? Sigh, no, Kara is in the pre-writing phase of development, of course we would love it if she could do this, but not even Meghan can write her name yet. (This year, it has to happen this year)

Amanda is very delayed, and no one could figure out an academic goal for her. We all decided working on attention span and eye contact would be a step in the right direction for Amanda.



Prior to the IEP we received the girls curriculum and I was very disappointed to see the books were basically the same as last year, with very minor differences. I knew at once that none of the girls could do anything on those pages, and being emotional I just started crying. I was told that some things were changing this year, and I was so excited about it. Work pages that our girls could do, YES! Alas, NO was the answer.



In my frustration I complained to the special ed teacher who called to set up the IEP drafts and she said "Perhaps you should just send them to a brick and mortar self-contained classroom". I told her I felt her comments were out of line and insulting, I believed that if the school accepted children with special education needs, then that school should accommodate the children with a usable curriculum. She was a bit flustered, I could tell, she said that they were working on a self contained type of online classroom for their kids in special ed. Of course I was thinking, strange, they are schooled at home, how will that work exactly?



Today their self contained classroom teacher called me and said we were going to be able to use a different curriculum for the girls. There is a program for children with autism we can utilize, I cannot recall what she called it, my memory sometimes, oh boy. Even though Meghan and Kara do not have a diagnosis of autism, schools have had success with the program for children with various diagnosis. She was also very excited to tell me that we will be getting Edmark reading program for our children this year. We had used Zoo Phonics, regular phonics, and none of these are working, so I am hopeful the program will provide us with the breakthrough we have been hoping for.



The little girls start school on Friday, I will check back and let folks know how they are doing, I am certain I will do some mommy whining along the way. Fingers crossed we have a good year.

Beautiful artwork featuring children

Such a beautiful Video

I have a voice

Gifts video

WDSD