Well, I feel like I am selling Ella in the public world...I've submitted her for a cover photo contest on www.parents.com and you can decide if you "like" her pictures by clicking on this LINK and clicking on "I like".
Let me know if you can't find it or can't click on it for whatever reason. I'd love to get our "special" child on the cover of a magazine!! Don't you think everyone should get to see this smile!?!?
Friday, April 16, 2010
Thursday, April 15, 2010
Ella's Developmental Update
Ella has made some great progress. She is precious and wonderful and happy and probably as close to perfect as any child (who is almost 4 years old) can possibly be...I mean, really, she doesn't do anything wrong. This seems wonderful, but sometimes it's a little frustrating. I'd love to know what she thinks and what she wants and 
what frustrates her, but for now, she's our wonderful little girl.
We recently had a follow appointment with one of our favorite doctors (Dr. Kathleen Roberts) and the report says we were in the appointment for 105 minutes (almost 2 full hours)...she is so wonderful and really takes the time I need to cover all the details of Ella's progress.
Here are some words and phrases that she used to describe Ella's progress, diagnosis and needs. I'll try to include explanations so that we can all understand what she is saying.
"obvious motor impairment"-doesn't really require explanation. Ella has the motor capabilities of a 1-year-old. They won't move that age up any further until she can stand and walk unassisted.
"relative microcephaly"-a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex. (she has a small head, but God graced her with a head of full curly helmet hair and no one would ever notice that her head is small, even us)
"some residual strabismus present"-her eyes still float out, they have a difficult time staying in alignment.
Neurologically: "brisk deep tendon reflexes in the upper extremities; the left being much greater than the right, and also in the lower extremities she is brisk", "tone is low throughout her truck bu increased in her extremities" (she is really loose in the middle of her body and gets tighter as you get out to her fingers and toes, you should feel her grip her hair or kick her feet). "There is some asymmetry of tone noted as well", "strength is diminished and asymmetric" (her left side is more controlled than her right side)
Her language skills remain at about a 14-15 month level. She just did a new speech re-evaluation with her therapist at OCH so I'm going to see what she thinks about this age. We have noticed that Ella understands SO much more than she can communicate. Last night I asked her "where is the baby?" 3 different times and ever time she scratches my stomach and when I told her to "kiss the baby" she leaned down and put her mouth on my tummy, she even "sang" to the baby, but I'll have to get Joe to record all of this...it will be fun to watch and see for me AND for you (whoever "you" are).
Final Impressions:
Ella is a sweet little girl who has mixed cerebral palsy with features of predominantly right upper extremity spasticity (tightness) and otherwise extrapyramidal (neuronetwork) features including hypotonia (low muscle tone) through the trunk. She also has oropharyngeal dysphagia (swallowing disorder) and has graduated from her gastrostomy tube. She has made some nice progress with regard to feeding overall. She does appear to have some intellectual disability as well.
Diagnosis:
what frustrates her, but for now, she's our wonderful little girl. We recently had a follow appointment with one of our favorite doctors (Dr. Kathleen Roberts) and the report says we were in the appointment for 105 minutes (almost 2 full hours)...she is so wonderful and really takes the time I need to cover all the details of Ella's progress.
Here are some words and phrases that she used to describe Ella's progress, diagnosis and needs. I'll try to include explanations so that we can all understand what she is saying.
"obvious motor impairment"-doesn't really require explanation. Ella has the motor capabilities of a 1-year-old. They won't move that age up any further until she can stand and walk unassisted.
"relative microcephaly"-a neurodevelopmental disorder in which the circumference of the head is more than two standard deviations smaller than average for the person's age and sex. (she has a small head, but God graced her with a head of full curly helmet hair and no one would ever notice that her head is small, even us)
"some residual strabismus present"-her eyes still float out, they have a difficult time staying in alignment.
Neurologically: "brisk deep tendon reflexes in the upper extremities; the left being much greater than the right, and also in the lower extremities she is brisk", "tone is low throughout her truck bu increased in her extremities" (she is really loose in the middle of her body and gets tighter as you get out to her fingers and toes, you should feel her grip her hair or kick her feet). "There is some asymmetry of tone noted as well", "strength is diminished and asymmetric" (her left side is more controlled than her right side)
Her language skills remain at about a 14-15 month level. She just did a new speech re-evaluation with her therapist at OCH so I'm going to see what she thinks about this age. We have noticed that Ella understands SO much more than she can communicate. Last night I asked her "where is the baby?" 3 different times and ever time she scratches my stomach and when I told her to "kiss the baby" she leaned down and put her mouth on my tummy, she even "sang" to the baby, but I'll have to get Joe to record all of this...it will be fun to watch and see for me AND for you (whoever "you" are).
Final Impressions:
Ella is a sweet little girl who has mixed cerebral palsy with features of predominantly right upper extremity spasticity (tightness) and otherwise extrapyramidal (neuronetwork) features including hypotonia (low muscle tone) through the trunk. She also has oropharyngeal dysphagia (swallowing disorder) and has graduated from her gastrostomy tube. She has made some nice progress with regard to feeding overall. She does appear to have some intellectual disability as well.
Diagnosis:
- Cerebral palsy (an umbrella term encompassing of a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement)
- Encephalopathy (literally means disorder or disease of the brain. In modern usage, it does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses)
- Feeding difficulties
- Cortical visual impairment (form of visual impairment that is caused by a brain problem rather than an eye problem. the latter is sometimes termed "ocular visual impairment"...which they have tested Ella for without being conclusive that the has... when discussed in contrast to CVI. Some people have CVI and OVI as well...Ella may have both, but none of her visual exams have been 100% conclusive. She does receive vision services through the school district and we LOVE our therapist so we hope she continues to receive these services)
That's all I can think of that is news, so if you have ANY questions please feel free to ask them!!
Friday, April 02, 2010
It's another...
BOY for the Mitchells!! There are so many emotions wrapped up in gender for me. I think I have talked about it before, but I was really struggling with my feelings over boy or girl. I knew that I had no control over the actual choice, but I did have control over my reactions and my feelings. I wanted so badly for Will to have a friend and a buddy. He is sometimes is so much like an only child, because Ella doesn't play with him, or even beside him. He is the only one who ever gets in trouble, or spanked, and the only person who calls us "mom" and "dad". I think it's so good for him to be around other "typical" kids and I wanted him to have someone to carry the burden of Ella once we are gone. Well, what about having another girl? I have thought about what it would be like to have another girl. To dress her in clothes that don't have to be adjusted for her being on the floor or for diapers forever. To have someone who would care to wear bows or play with all the dolls and toys that Ella has received. Someone to boss around Will and just be a buddy for me to do "girly" things with all the time. Someone who would actually care to see the Disney castle with me or beg to meet all the princesses and want to get dressed up like them. Oddly, as much as I pain for all of those things when I see them...I don't really miss them on a day to day basis. I'm not super girly. I'm probably not very "proper" or do all the girl things that so many of my friends do. Even when it comes to dolls...I never played with them as a little girl and wouldn't know the first thing (or probably even enjoy) a pretend tea party. I really much prefer watching the Cowboys on a Sunday afternoon or wrestling with Will (when not 5 months pregnant). I'm excited that this baby is a boy. I think the Lord really read mine and Joe's hearts and knew that we just weren't ready to have another girl, neither of us was ready. God has really protected my heart in this area...seems small, but I've loved feeling blessed by the genders of my children being so carefully picked out. For now we are a family of 5. Some have asked if we are "done" and I don't have an honest answer. Joe and I always talked about having a lot of kids...started out at 6, but has moved to more like 4. It has been rough this time to have the two older kids and be pregnant. We will just have to see, in a couple of years, where the Lord has our family and if He has placed a desire and available energy for us to add another person. I really think that He gives you the "all done" signal if you are looking for it...and I'll just wait to see what He says. I'm grateful, as I'm reminded that I was once told that it would be touchy for me to ever get pregnant (with severe endometriosis) but the Lord has blessed us with 2 very wonderful children and we look forward to meeting #3. I am reminded constantly, through friends, that these children are His, and we have no guarantees, but for now I'm content with exactly how our family is shaping up! Oh, and no (oddly) we don't have a name yet. We had a girl name all ready to go, but we are still tweaking the boy name and will let you know as soon as we are sure on it.
Thursday, April 01, 2010
Kramers
Prior to our Florida excursion we had dinner with our dear friends Michael and Katherine before they headed off to be residents of the State of Georgia. My heart is still heavy about their move and I'll have to do an "Ode to the Kramers" soon.
Day 4: Resorting It
On the last day of our trip we hung out with the new bride and groom, some friends and just laid around their resort and pool, then we sadly had to go home.
Day 3: Disney!!
I have never been to Walt Disney World...so I pretty much MADE the adults take the kids so that I could go. Seriously, something magical about just seeing that castle!! Ella loved EVERY minute of it and Will enjoyed himself. I wish we had gotten to see more. Joe said next time we'll just stay at the park and do a little bit every day. Ella rode the teacups and I was so excited to watch her ride her first amusement ride...thrilling for both of us! I also discovered Ella's love for cotton candy...my kind of girl. And we couldn't leave the park without getting both of them a set of ears with their names on the back!
Travel, Wedding and Disney...Oh My
Joe has three brothers...he's the youngest of the four boys. Matt (the "wisest) lives in Atlanta, Drew (in school to be a paramedic) lives in Orlando, and Josh (whom we've discussed previously) lives in China...then there is Joe. Last week Drew, the next to the oldest, got married to Sandra. We are VERY excited because I've known Sandra since before Joe and I got married and to me she's always been a part of the family...it was nice that Drew decided to make it official. I adore Sandra. She's from Puerto Rico and I understand about 75% of what she says, but she says 100% of it with a smile and a wonderful attitude so she makes me smile the whole time she's talking and I just love listening to whatever she's saying!! So, our family loaded up and headed to Orlando to get to attend the wedding and have a small vacation.
Day 1: VERY EARLY flight to Orlando. 8am flight=household up at 5am to get to the airport and through security in time...yuck. However, the kids were total troopers. Of course as soon as we hit the Florida sun the pool was the first place everyone headed!
Day 2: Wedding Day. It was a beautiful day and the wedding was held at an amazing golf course called the Windermere Country Club. Everything was perfect, except the bride was sick...I mean REALLY sick. Sandra ended up with a horrible horrible stomach virus that kept her away from everything except the ceremony itself...and then they spent all night in the hospital getting her rehydrated and better. Poor bride, but she was a trooper all weekend. The parting pictures are from some gifts that Sandra put together for the kids, and Will decided to model on the way home.
The Wheels On the Bus
Ella rides the bus to school now. It was slow going to get all scheduled and get the bus figured out, but it's wonderful. They pick her up every morning right at the end of our front sidewalk and drop her off every day after school. She really seems to love it, and it is a huge relief to me. Here is a shot of her ready to go and one of them getting her up and on the bus.
Howdy Cousin
Josh is one of Joe's brothers (there will be more posts on brothers coming later). Josh is 18 months older than Joe and lives in China with his family (Wendy-wife, Abe-2.5 and Zeke-1.5). I'd say that we don't see them often, but we actually got to see them at Christmas, so getting to see them a lot this Winter/Spring was a huge treat. Here are some pictures of the Mitchell guys taking the little Mitchell's out to the Fort Worth Stockyards:
Step by STEPS
Ella has started an AMAZING feeding clinic. The program is called STEPS and it's hosted by the Callier Center in Dallas. It's 16 weeks long and requires an hour and a half every Friday. It's set up great and I've learned as much as Ella has, maybe more. For the first 30 minutes we work on Ella's oral motor functions...just stretching out her cheeks, her lips, give her awareness of the parts of her mouth and waking up her tongue. This just gives the kids a chance to really use their mouths without having to work on the food and swallowing aspect of eating. Macy, Ella's therapist (seen here), loves that she can get in E's mouth without any problem 
. Most kids want NO ONE touching inside their mouths and Ella loves it! The next 30 minutes we go separate directions where I learn more about feeding and oral motor issues that may or may not effect Ella (a lot of good information to use with Will as well) and Ella goes with Macy and they work on core strength (since it's so key to Ella eating more safely). The last 30 minutes of the session we work all together to feed Ella new things she has never eaten before...it's SO fun and SOOOO nerve wracking. The first time we gave Ella a spoon full of Spaghetti-O's I held my breath. Ella has gotten cleared to eat so many new and "normal" foods at the house that it changes so much about our day and eating. I still get stuck in a rut at the house and find myself going back to the things that are easy and safe, but this has pushed us so far in the last few months and I can't wait to give you all our "graduation" report!!
. Most kids want NO ONE touching inside their mouths and Ella loves it! The next 30 minutes we go separate directions where I learn more about feeding and oral motor issues that may or may not effect Ella (a lot of good information to use with Will as well) and Ella goes with Macy and they work on core strength (since it's so key to Ella eating more safely). The last 30 minutes of the session we work all together to feed Ella new things she has never eaten before...it's SO fun and SOOOO nerve wracking. The first time we gave Ella a spoon full of Spaghetti-O's I held my breath. Ella has gotten cleared to eat so many new and "normal" foods at the house that it changes so much about our day and eating. I still get stuck in a rut at the house and find myself going back to the things that are easy and safe, but this has pushed us so far in the last few months and I can't wait to give you all our "graduation" report!!
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