Dallas and Charlotte pics 7.14-11.14

 This video is back in July 2014 a few weeks before Charlotte's 1st birthday. I laughed at her clapping her feet and thought I would share it with you hopefully you are able to view it.

          Charlotte is just being her loving self. Pictured with her mom, myself back in October 2014

  We got a new Red Heeler puppy and named her Kelty. Charlotte was ecstatic!! Kelty rode home in                                                    her carseat with her the whole way home.

 Dallas dressed herself in this all pink outfit and her new rain boots that are 2 sizes too big for her and                                                 yet won't take them off. November 2014.

This is Charlotte crawling 2 days after her first successful try. The first crawled on her sister's birthday!! She was just a little over one year old. We taught her how through early intervention and 5 days after we showed her how she decided she could do it and try and try until she was successful. This video is of her first long distance crawl she was so determined!!

             Dallas and Charlotte playing together. Charlotte is always a happy girl. October 2014.

 Dallas and Charlotte. Charlotte has been working on weight bearing and pulling to stand. She needed help with her legs not locking. This is her standing with her new braces they give her better support and more correct posture.

 first day with her braces. The right leg only needs support for her ankles so its just and AFO. Ankle foot orthotic. The left leg is a little weaker and the brace goes up to mid-calf. They design it this way with a little lift on the heel to push her weight forward it encourages her to not lock her knee when standing.  October 2014.

 Dallas' first pony ride at a fall harvest fair. She was so excited even though she doesn't look it and                                               had a great time....so she told me. October 2014

 Charlotte's first pumpkin we picked on her size so she could hold it. It came home with several                      pieces bitten out of it but she loved being able to hold one all to herself!! October 2014.

 Dallas being super impressive being able to climb these tires with no help. She struggled a little bit but she was so proud of herself and that alone is worth anything!! I love that she tries to do things she may or may not be able to do. As long as she tries wether failing or completing makes me proud of her!! October 2014.

                                     Dallas, cousin Molly and charlotte. September 2014.

 This is Dallas' first Dance outfit. We put her in a dance classes at a local gym that does 20 min. of gymnastics, 15 min. of ballet and 15 min. of tap dance. She is enjoying and although she can't do a lot of the steps correctly the teachers are awesome with her and encourage her. She goes once and week and is already showing improvement and more confidence. She tries to do a lot of the steps by herself before asking for help and we're even somersaulting by ourselves now.....super impressive!!! If you notice her left leg is smaller and much weaker than her right leg. She favors the right so it has become stronger we are working on strengthening the left its amazing how much weaker it is but it'll catch up eventually.

 Dallas' Fist day of Preschool. She is in developmental preschool held by her Elementary school. This is her last year before kindergarten. She is wearing braces that go up to her knee to also push her knees forward to help correct her posture and give her legs and ankles support so that they don't wear out and tire as fast. August 2014.

                                                  Mom and Charlotte selfie August 2014.

               Charlotte and Dallas at home depot. They love the shopping carts. August 2014.

Dallas talking

               I wanted to post a video so you can see how unintelligible yet adorable her talking is.

Embracing this!!

My husband and I were talking the other day about "normal" kids and parents. We were thinking how they probably complain why their kids can't do things other kids do and constantly compare them which seem perfectly normal. I was saying that I don't think I will ever have to say that because we know why she can't do a lot of the other things "normal" kids do. However, I don't say those things in envy or malice I figure these are the cards we have been dealt we can't change so I try to embrace it. It makes me sad when I see other parents struggle with it and wish I had some sort of words of encouragement to help others embrace this. I am a religious person and I believe that in our pre-existence before we were born we chose these difficulties and problems up in heaven. I once heard a story of a family who had two severally handicapped little boys. They had a blessing revealing that up in heaven they served at generals to God in the pre-existence. When they were to be born they were born this way so that it would be harder for Satan to corrupt these little boys. I look at things this way. Maybe these little girls were important up in heaven and thats why they were born this way. I talked to my bishop about these things and he said "God must trust you a lot to give you these trials and these two little girls." I felt really blessed and grateful when he said that, "trust you a lot" that really hit me hard. I wouldn't trade them for anything else. It's great that every little thing they do like hold their head up is a cause for celebration in our household.

Pics and Videos of the girls

 a little nostalgia I was laughing when I watched this I forgot this was how she got around for the longest time!!

My little Charles lifting her head up at 5 mo. she's freakin' AMAZING!!

                                                             Mom and my 2 little girls

                                                               Daddy and Charles

                                                       Little Dallas now at 3 yrs. old

My little cutie

Here's Dallas she is a stinking cutie! She's no exhibiting her terrible 2's now that she doesn't have mom's complete attention. She is also a little tornado but a big helper too. Her speech therapy is paying off she is saying 2-3 word combo's and the words are becoming more clear. We've also contacted a sign language teacher to come teach us sign language so we can better understand her. Many of her words sound similar so if we can incorporate sign language into our daily conversations I think that would clear up a lot of the confusion and frustration. I definitely encourage the sign, it doesn't prevent her from talking or speaking like a lot of people think if anything it has helped her speak better. She used to exclusively sign milk and now she feels comfortable saying it and doesn't sign it anymore although we are trying to get her to sign and say milk at the same time.

She does love her little sister Charlotte. She asks to hold her and feed her and she gives her kisses and hug's so shows me all her body parts like her nose and eyes. I have to remind her not to poke her in the eye. She has some sort of morbid fascination with that. Then she goes to show me her teeth and looks bewildered and where are her teeth. I tell her I don't know where her teeth went and she seems satisfied with that. I'm so glad her little sister could be a part of learning the names of our body parts. She loves to help me change diapers we also say "ew" and "ca-ca" together. We breastfeed our babies and put them to bed together so we still get some bonding time.

                                               me and little Dallas.....not our finest picture

                                          she wanted to wear pink just like her little sister!

                                                                We love naked babies!!!

Dallas' New Sister!!

So despite that my chances of having another child with MMD are 50/50 we decided to try again for another child. After conceiving we decided that we did not care to find out if the child had the disease or not and did not do any testing. After having talked to a few Dr.'s they talked us into having testing done in the better interest of myself and the baby during delivery. They said that during delivery if the baby had the disease then all the necessary personnel could be present to help the baby get the correct treatment if anything went wrong. So an amniocentesis was scheduled at 25 weeks gestation. It takes generally 4-6 weeks to get the results back. I also had testing done to see how many repeats I have. I got my answer back within 2 weeks. I only have 233 mutated repeats. I received the baby's results at 30 wks gestation and she has 933. They say that usually it only about doubles what the parents have but the interesting thing is Dallas has somewhere around 636 repeats and the baby has over 900 that was shocking to us. So I cried when I got the call. We had so much hope that she would be 'normal' and we had prayed and this was our answer.

The pregnancy went pretty well it was about the same as dallas with maybe a little bit more fetal movement. Most days I would feel her move all day and then some at night. That is when she was most active was at night. I went some days without feeling her move at all and that is a little scary. She was breech the entire time so I went through a C-section delivery. I definitely would not recommend that if It can be avoided. The recovery was long and painful for me. On the delivery day I was a nervous wreck. The hospital personnel was so kind to us. I had expressed my fears and concerns for the baby that she would be sent straight to the NICU and I wouldn't get to see or hold her. We thought with her repeats being as high as they are her condition would be more severe than Dallas'. So the delivery staff said they would do all they could so we could at least see her and hopefully hold her. She was delivered and started to cry immediately which made me feel so much better that she was breathing. Her cry was quite loud which surprised me. They cleaned her off and placed her on my chest so i could see and hold her and they told me she rated and looks absolutely 'normal'. They kept her in the NICU for 7 hours just to observe her and make sure she was doing okay. They kept it under 8 hours so i wouldn't be charged for a day in the NICU. She did just fine, sucking was good, breathing was good. Her blood sugar was a little low but that was about it and it came up right away after a few feedings. I spent the next few days with her in my room the entire time.

The disease is really interesting that she could have so many and be perfectly normal so far. We are still keeping an eye on when the symptoms will show up. Maybe in the next few months, or as a child or she could be just fine until adolescence or adulthood. We are just crossing our fingers hoping they don't appear until after she starts talking and walking. I don't want to go through all the therapy that dallas went and is still going through. We named the baby Charlotte I sometimes call her Charles. She is a little over 2 months old now and is quite wiggly and talkative her smile looks great and she's got pretty good head control. I had Dallas' PT look at her and she says she has great tone and all the necessary reflexes that babys are born with. She's even got a great grip.

So there is hope!!

                                 This is little Charles she looks so much like her big sister!

some more photos of Dallas growing up

                    at least these are cuter than her other shoes, we practice our colors with these too!!

                                  Classic open mouth I love her long blonde hair, she's a cutie

                                She's pretending to drive, loves anything with a steering wheel

                    She insisted on carrying the bags and walking, she wants to act just like mom!

                                             Just a girls day at carl's Jr. with her cousin molly

5.16.2013

Currently Dallas is walking doing well. However, since she has little and very weak core muscles she walks with her belly sticking out. Her back is very arched and her belly muscles are stretched so they unable to be used much. She's got brand now braces that have a wedge on the heel that makes her lean forward so that her knees are not hyperextended. The PT thought that caused a lot of the problem with her walking like that. I have noticed these new braces are a little harder for her to walk in. The wants to walk with her knees like that but these braces won't allow it and so it's taking time for her to get used to these new ones. I will post a picture of them. they go all the way up to her knee but I got to shop for some cute kicks to go with the braces. The orthotics specialist that made these braces say they can order shoes to go with them through a company called "keeping pace" they make wider shoes but they run about $50. So I went to journeys for kids and looked at DC Shoe company, Vans and ended up with Osisris shoes. All skate shoes, but they tend to run wider than other shoes and fit well over the braces. The wedge on the back made it a lot harder to find a shoe that fit but I found one with a high top so her braces wouldn't fall out the the shoes as easy upon walking.

                       her cute new braces, the wedges are made of cork they are a little hard to see

                                               these are the osiris' her braces fit right inside

Her weak muscles also create another problem. Mouth weakness. She has a very hard time talking. She can't pucker her lips so all those sounds are very hard for her to create. She is in speech therapy to help her talk. Being almost 3 years and hardly saying any words or intelligible words is a bit frustrating. We have a lot of communication frustration. Sign works really well and if classes are available for that go for it!!! However, she prefers to talk I just can't understand more than half of what she's saying and we only know a few signs. She loves the therapist they play games and practice sounds, name pictures she has a ball. They also teach me how to teach her so I have a little homework to do  every day but she's making progress hope we can get her talking by kindergarten!!

She's on disability medicaid and have some insurance through her dad's work that cover the speech therapy. With all the appointments we have we are sooo grateful for the disability medicaid. There is no way we could afford all the Dr's bills. She stills sees specailists, therapist's of all sorts several times a month and I don't think that will slow down anytime soon.

Standing and Walking Hooray!!

We stayed with her "papa" in September before moving up to Idaho this is when she started to do more standing she wouldn't stand on her own but she got on her feet and while being stabilized by holding on to something for support she would and could stand. We had a walker provided by Early Intervention brought in to try and encourage her to walk. There were a few times we would see her stand all by herself and you could see it in her face her debate whether to take a few steps or not. We were about to see her a few times take several steps without any support it was sooo exciting!!!

We got her in the walker at first she absolutely hated it and would have nothing to do with it. It is one where she drags the walker behind her instead of pushing it forward. It worked out quite well when she got the hang of it. We had to coax her with various items to get her to use it only then she would walk about 2-3 steps using it before ditching it and revert to crawling. We would take her outside and she would walk on the sidewalk a few times, looking at the flowers was a great incentive. When we got up to idaho we found an identical one on Ebay and had it shipped to us. It was about $30 was all. She didn't use it a whole lot it just ended up being pushed to the side. The other kids, her cousins, had fun with it which encouraged her on some occassions. We tried to be diligent and get her in it and have everyone in the house just praise and praise her. She used it more and more doing a few more steps finding linoleum is great to drag it on. One day we got home from running errands and she got inside of the walker and started cruising all the around the house....everywhere doing circles in the kitchen absolutely loving it. I think she got fed up with not being about to get anywhere fast and the lack of independence having to hold onto furniture to walk. The walker hasn't been put down since.

Then the walking came. Another afternoon I had put her braces and ugly shoes on after not wearing them for several weeks and we again came home from running errands and i set her down on her feet. She stood for a little bit and then took off walking. No assistance from furniture no walker just all on her own. This was late march 2013. My jaw dropped. I got out my cell phone and started recording thinking I've got to send this to everyone no one will believe it. So i posted it on facebook so all her distant family could see it. I was sooo excited for her I shed a few tears and praised and praised her. She was so excited she had the confidence to walk all by herself!!!

Now whenever we go out she'll walk on her own but I insist on holding her hand to give her support so she doesn't completely wear herself out. Early intervention insists on her still using the walker so she can walk farther longer so she won't fatigue as fast. I notice when she's really worked out that day she'll take about a 4 hour or so nap just to re-couperate and then she'll be ready for sleep at night about 3 hours later. Otherwise her naps are around 2 hours. Her physical therapist mentioned that overworking her muscles may actually be breaking them down and once they break down they don't come back. I just am not sure what to do the fact that she knows she can walk on her own makes her not want to walk with a walker. So its a win/lose.

Dallas' new found hearing loss

We've now moved up to Nampa Idaho and have been quite busy soooo much has changed and happened!!

In December we took her to an ENT and they put tubes in her ears to help all the fluid drain out. They repeaeted a hearing test on her and she failed again in her right ear. We had to take her in to do another ABR which is done under sedation it took her surprisingly about 3 hours to full sedate and fall asleep. They found just mild hearing loss so in her right ear everything sounds like a whisper; her left ear is just fine....thank heavens!! We got her a hearing aid and has been wearing that since mid-march 2013. I am not sure if hearing loss coordinates with muscluar dystrophy or not some say yes other say unkown.

Yea! photos

So i finally figured out how to download my phone photos to my computer these ones are slightly better. I wanted to post what her feet now look like so I hope these are sufficient.

just another sleeping picture of her odd positions and you can see her feet also are straightening out.

                                       semi curved not nearly as bad when she was born.

                                               how can you not think these are adorable!!

          Good picture of her nicely rounded head......8 months of a helmet for this!!!! So worth it!!!

 This picture is just cute she loved the windows down in the car blowing her hair around.

picture of her innovation of crawling...they call this a bear crawl she's getting better at it but its a precursor to standing on her own.

more recent photos

here are her new-er braces and the shoes I have mentioned before. They aren't very girlie but the serve the purpose to help stand and walk. The bottoms are very wide to add stability and the braces support her ankles.

Early Intervention loaned us this walker which she absolutely hates for unknown reasons. She can't figure out how to make it work but she did learn how to push backwards but that still wasn't enough for her.

It an odd photo but she is in the middle and I want you to see how flexible not having muscles can make you. She has her sock in her mouth. She is about 20 mo. old in this photo.

If you can see a better shot at her braces and shoes brand new!!!

having muscular dystrophy has advantages of being small. She is one years old and fits in a little toy wagon. Grandma had to much fun with her and they both loved it.

                                A cute picture of her first crawling. She in a tube obviously.

This is the picture that goes with the story of her first standing. She stood like this for about 10 or so seconds but she was leaning on the couch. This day was the first day we witnessed her optionally weight bearing. I did have to hold her belly up a little or she would've fallen right down.

Early Intervention loaned us this stander. She tolerated it quite well. She had to be strapped in and strap her little bottom in. She used to stand with her butt sticking out and her knees bent so this contraption helped her stand straight and forced her to weight bear. They say they don't like the sensation of bearing weight so this helps to desensitize that uncomfortable feeling and they can get used to it. It worked!!! If you can get access to one of these do it!!

I took this picture yesterday. She is with her cousin in a car seat just being normal. She is pretending to talk on the phone. She has her cute little braces and shoes on.

This was taken just this last august she is pretending to ride the 4-wheeler. She has all the strength to lean forward and hold herself up. She mostly acts just like a normal little girl.


the braces are a life saver I will try to post more current photos of her and her feet but they're all on my phone. These pictures were all stolen off of my facebook page. Drew n Michelle Crenshaw. The pictures are all open to the public if you want to browse more. She's got a great support group which is important and just praise for all that she does keeps her going. Her feet are straightening out with the help of the braces and the shoes and the standing. I keep telling her hers are normal and all of ours are not. They are now adorable to me. She is a little over 2 years and will closely fit a size 4 shoe in toddlers/infant. With the help of her braces and the weight bearing her feet are now starting to grow. She went from a size three to a 4 in about 6 months which I hear is slow but I think its pretty good considering she was in newborns at 6 months and size 2 for almost a year.