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.