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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

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.


GoldenAngelsWorks said...

Sounds great about all the riding Fred is doing. Wish I could... I miss riding bicycles. Used to live on mine.

Congratulations to Terry and Anna. My husband and I did the JOP and they also told us 2 people. Luckily for us the JOP was really nice because I was able to have both my parents, my sister and all 4 kids with us. I hope that their JOP is just as nice.

WOW Brian is really flying with his acting. Keep up the great work Brian.

So sorry to hear that Julia is going through all this. I hope the PT is wrong.

Hooray for Amanda... hope she will be able to do the self feeding and walking soon. She is a cutie and a little mermaid.

Wow Meghan is sure growing up. I also see the similarities with her and Julia. We had the same clothing/undressing issue with my sister and my girls.

Kara is too cute in that bucket. Sounds like she may feel more secure in tiny places.

As for not being with the girls during their blood test.. I understand that one. In fact, when I was taking Patty to the dentist they absolutely refused to have me in the room during the procedures. They said even though I would be sitting near by ... having me in the room caused her to freak out.

As for the cat issues.... I definitely know that one. You should see how Robert is to our cat/dog. That cat will let Robert do anything to him. Everyone keeps saying they cannot believe the cat lets him do things to him. When Robert is at school cat will walk the house looking for Robert and yelling hello. (yes the cat says hello)

The McEacherns said...

Hey, thanks for stopping by our blog! Since we're also in AZ (Phoenix), I'd love to know what doctor did your daughter's surgery, if you'd recommend them, etc. I think I feel good about our doctor, but we really don't know that much about him!

Alice said...

How wonderful to get an update on your family! My first thoughts were

Julia must be a senior because she is the same grade as my oldest son. This is my first time, and it is killing me!

Meghan is growing up. She has lost that baby face. She is very lovely, and I think she looks like Julia, too. She looks very delicate and pretty.

Kara still looks like trouble to me.:) She is so cute, and she looks so spunky! I'm sorry to hear she is lethargic. Could she just be tired from bouncing all night?

Amanda is chubby? She almost looks chubby! She does look so sweet in the pool!!!

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