Birthday Blessings!

Today our beautiful baby girl turned 4 years old!!

We celebrated Nadia's 4th birthday with my parents (minus Anthony, he is California with his father for the holidays) on Sunday after church. We headed to Riverbanks Zoo is Columbia, SC for Nadia's 1st zoo experience. She LOVED it!












We had dinner at the Outback Steakhouse and Nadia refused to eat her chicken and scarfed down my prime rib! Piglet!! LOL She opened her presents after we sang HAPPY BIRTHDAY and was SOOOO stinkin' happy! First of all, she was a princess for the day (as if she isn't any other day). She wore a teira, beads and even a pink boa and dress-up clip-on earrings! I'm not sure I have ever seen her so excited.

(that's the short version, I somehow deleted what I had previously posted. OY!)








Today (her actual birthday) she had OT. Much to our surprise they had a bike for Nadia to ride (an adaptive tricycle). Nadia squealed with delight (something she seems to do these days when she is REALLY excited) and was in a hurry to get on and ride. While her therapists know she tends to do much better than expected, her OT was really thrilled with how well Nadia did. She pretty much took right off and was peddling her way down the street. When she came back in for the remainder of her session, her walking (assisted) had greatly improved. She was lifting her legs and moving along, seemingly without having to think about it! Her OT says that riding the bike will do that for her.



I was so excited, I wanted to find out how to get her one of her own. Unfortunately, the bike she was riding cost about $1,300!! I did a quick search online and found they are generally pretty expensive. I had mentioned to the OT about maybe trying to find her a used one and while she thought that would be great, she did say she wasn't sure how long Nadia would need all of the adaptive equipment. Wow!

Well, we have been blessed and were allowed to bring the bike home to use over the Christmas break. Nadia came home and showed Yana & Papa her awesome riding (see the video below). She doesn't look where she is going and needs to work on steering but her peddling is pretty great! When we came back in the house after riding, I did the assisted walking with her again and was just so blown away at how wonderfully it affected how she took her steps. I am so excited to see how she will continue to progress.

As far as the wheelchair, Nadia is not thrilled with pushing it along herself. We continue to encourage her to use it and take her out shopping with it and even to the zoo. She prefers for me to push it for her and very rarely will move it herself. BUT we are working on it and not giving up. This evening though, I wanted her to work it out herself one time back & forth down the hallway. Yana told her that if she did it like a good girl, tomorrow Santa would come and bring presents while she was sleeping. Nadia was happy to give it her best. Going down the hallway she ended up sideways a few times because that right hand is working more than the left. On the way back I seemed to be able to make it clear to her that she really needs to work hard with the left hand and she kicked butt!! I hope we can continue to get a little more practice each day and see more progress going straight.

Anyway, we are SO blessed. More & more miracles and more & more progress!! Just wait until they hear and see all of this back at the baby house!!!

Got Wheels?

Have you ever seen such a tiny wheel chair? I haven't.
Imagine what was going through my mind as I tried to picture such a thing. All I could think was, "It better have one of those poles with the flag on the end so people won't trip over her!" LOL

The wheel chair is only temporary. The PT/OT are trying to come up with ways to get Nadia away from the "W" sit while we prepare her for walking. We are also trying to find ways to help her be independent.

Today was the first day with the wheel chair, so lots of going in circles LOL Her left hand is affected by CP but we really feel she just needs to be encouraged to use it more. We have already found she is using it much more. However, when pushing her wheel chair, the right arm is working more than the left (the left seems to be more of just going through the motions), so lots of circling and crashing. I have found when she crashes into something she doesn't mind! If it is a draw she will just open it! If it is a cabinet, she will open it! If there is a toy there, she will play with it! She likes to act like she planned to go there or something, I guess! LOL

Nadia has not stopped amazing us! She is learning colors, counting to 10 on her own, speaking more and more English each day and physically overcoming her handicap, literally, each day!

Last Thursday in therapy, they decided to try and show her how to crawl correctly. The thinking was that it would likely be a waste of time because her froggy hop is already a habit. But a few assisted "steps" and she took right to it! She now will crawl correctly without even being prompted but occasionally will need to be reminded but she is doing great!

She also has begun wearing the knee immobilizers at night. She tends to sometimes pull her legs in at night (like an infant) but the knee immobilizers helps her to get hours of straight leg stretching time while she sleeps.



Much to my surprise, Nadia has not complained even once about having to where them at night! What a blessing!

As fabulous as all of this is, here is the biggest shocker to me and her therapists....Nadia is almost as flexible as I am!!!!! Yup, seriously! During some stretching/play time with her orthotics and knee immobilizers on, I found she can touch her toes! She can almost put her chest to her knees! She can stand up and touch the ground (with my support for balance). Who knew!!! This was such a fantastic discovery. So we now know that she DOES have range, just not functionality and here we thought her problem was both.

Of course, she needs to be feeling completely relaxed for us to get anywhere close to where we got that day. As soon as I called Dan in to take pics (I thought no one would believe me), she tensed up and we never got the shots. But when it was just her and I (and Barney on the tv), we were just singing away, stretching and playing while she blew my mind with her abilities!

Nadia also had not been reaching above her head. We started to get her to a little (like when I wanted to undress her, to take off her shirt) but still her elbows really were not going above her shoulders. Well, at the therapy last week they had her on this GIANT ball, bent backwards. She would be rolled back (towards me) and we would reach for one another. This seemed like such a wonderful exercise for her that I went out and bought the biggest Yoga ball Walmart had. So Nadia and I have been playing games using the ball, with her bending over on it backwards. I hold her legs and roll her back towards her head. I place various toys in a bucket by her head for her to pick up, one at a time, then I roll her back so she can do a sit-up, hand it to me, then I get a kiss and we repeat the exercise/game again. Well, she is now reaching WAY high above her head with both hands. I am so incredibly proud of her.

Her progress is amazing and does not seem to be slowing by any means but actually picking up speed. I pray that we can get all the pieces of the TheraTogs worked out and any other equipment that will help her, in place so she will begin to take greater steps (figuratively...and literally speaking) towards walking.

Pics & Progress

Sorry, but how cute is she!!! Miss Nadia Hope


My beautiful 12 yr old Yana is looking more like a teenager and occassionaly wears a matching snotty, know-it-all attitude. Let the fun begin!


Anthony, my handsome 13 yr old, is now only about an inch shorter than me. What happened!!



Mom taking a million pictures looking for the one perfect one can be painful!!


Ummm, I'm trying to take picture here! HELLO, look at me and smile!!


I said LOOK HAPPY!!!!!!!!


Nadia in motion.Tthis is how she "crawls" The therapists call it a bunny hop but I call it a froggy hop :)


We had an unexpected visitor show up at our door on Thanksgiving. I'm pretty sure that is Frank from Men In Black! lol






Now see what unconditional love looks like! Here is a sweet, sweet pic of Nadia sitting angelicly on Dan's lap for the first time! (aww, look at how Dan is adoring her)




This was what Nadia used to look like when we tried to put her on his lap and she did "go there" again during this sitting (wanted more bread and Mama's arms) but see how Dan is still looking at her with those adoring eyes while she SCREAMS! Now that's true and unconditional love!!!



And real quick, more progress today!! I dropped Nadia off at preschool and she did AWESOME! They said she had one very loud meltdown (that's the only kind she has lol) but it only lasted 2 mins. The meltdown came when the school PT was following her around as she crawled and was repositioning her legs. Yup, that would do it! Glad to hear he backed off and will move in slowly (she probably scared the poopka out of him lol).

The other progress was with my mom. Even as recent as this evening, she would not go to my mom and would not really even let her touch her. Well, I left the kids with my parents after dinner, so I could get my hair cut (yup, chopped it even shorter). When I came back, Nadia was on the couch next to my mom giggling because my mom kept putting the blanket over Nadia's head playing peek-a-boo. Well, Mom can now touch her, pick her up and even exchange kisses. I think she is a VERY happy grandma (or as Nadia calls her "Glam Ma!")

Alive & Doing Well!

Now that we are home, I'm sure many readers have dropped off and moved on. For the few that are still sticking around and for those who might stop by later to see "what ever happened" (LOL), I am posting this update. :)

Nadia is doing FANTASTIC!! Each week there is tremendous progress easy to see socially, emotionally, verbally and even physically. Over the past 2 weeks she seems to have had an explosion of vocabulary and come leaps and bounds accepting new people & situations. The biggest accomplishment, I would say, is that she will go to Papa now. She still does not go to him like she does me but she will reach for him to take her out of her car seat (if he is standing there and I am not), he has carried out of my bed in the morning when she awoke after me and even sat on his lap chowing on bread on Thanksgiving day!

Nadia is so stinkin' smart! When she wants her apple sliced she will ask (or tell lol) me "cut it". She now asks "like it?". She regularly says (after someone sneezes "bless you" and if someone says "thank you" she will respond "you're welcome" If someone else blesses her from a sneeze she will say "thank you" (of course she uses her manors at other appropriate times as well). She says " 'xcuse me" and "that's awesome" (lol) and a million other things. She is a sponge.

Today was her first day of the SN preschool and I wondered how long it would take for her to transition enough for me to leave her. I spent the whole class watching from behind a tinted window, and I totally could have left! I know that sounds typical for parents and children their first day but she has had a lot of anxiety about new places and new people (especially if they touch her and the teachers did have to pick her up to move her, etc) so this was a HUGE success. Tomorrow I plan to walk her in and then head home (maybe pray for Mommy this time lol).

Therapy is also getting much better. She is letting the therapists touch her so we are increasing her visits from 1hr to 1.5hr. We plan to work up to 2 hour for an hr of OT and an hr of PT WITH MOM IN THE WAITING ROOM. I am still in the therapy room with her but I think soon (based on how well she did with school today) I may be able to start stepping out.

So the therapy/walker update. Although the advice I am getting from our therapists seem to be much different than what everyone else is hearing, I honestly feel very confident about what they are telling me and their approach. As I mentioned they do not want Nadia to have a walker, but of course all decisions come down to what I decide. Along with developing "bad habits" they also said at this age the bones are very soft. If she is walking incorrectly and not using the correct muscles, her bones will not form properly. They explained the goal is not just for what she can do "tomorrow" but to have this body last her another 70+ yrs.

The approach they are wanting to take is to retrain her brain on what muscles to use. Of course right now she is using all the wrong muscles, trying to compensate for her areas of CP. However, they showed me that when they position her legs correctly and hold them there for her to stand, those other muscles will automatically "shut off". When those muslces are "on" constantly, they get tighter and tighter and will not grow, like the others, thus result in being shorter.

So how do we get her in the right positions and using the right muslces. Along with therapy sessions she will be wearing a therapy suit called TheraTogs At this point we are only adding one piece of her suit at a time, so she can get used to wearing it all day long, everyday under her clothing, so she only has the chaps and vest, but I have seen videos of other children in TheraTogs. I have not only seen the TheraTogs video but the video Nadia's therapists made of another child they are treating. WOW! What an instant difference it made in the child's ability to to hold a position, and regain control and usability in parts of her body that were ordinarily contracted due to trying to compensate for other weak or tight areas.

The TheraTogs (once we have all of the pieces) should work like full day therapy EVERYDAY, constantly giving her extra support and positioning her legs in the correct position (she has one leg that is majorly rolled inward).

In addition to the TheraTogs she will also be getting braces for her feet, similar to AFOs but will be more flexible, more comfortable and will not go as high up her calf. She was going to get AFOs but the therapist feels she will likely respond very well to these other braces and perhaps it will be easier for her to adjust to all of this new "equipment" on her body.

More contraptions. She will also be getting a S.W.A.S.H (look at pages 13 & 14 of the link) Not sure yet how often she will need to wear it. It is supposed to also help keep her legs from scissoring and her inner thighs from contracting when she sits (which she already seems to be getting much better with). With this she will not be able to W sit (YAY) but will give her support so she can properly get herself into a more appropriate sitting position when on the floor.

And lastly, because I felt it was very important to get her eye level with her peers, the therapist suggested we borrow their Rabbit Stander Nadia tried it out about 2 weeks ago but it was the day after receiving 5 shots in her thighs for immunizations (OUCH!). She was VERY sore for 2 full days. Between being in pain and afraid, she was a VERY unhappy camper and screamed the whole time she was in the stander. We decided to hold off on the stander for a little bit but try again later so she could use it for school, church or where she wants to be more mobile. With the TheraTogs, this should also have her standing in the correct position, strengthening the correct muscles necessary for walking and standing.

Well, that was a rather lengthy post and it's past my bedtime :) I was attempting to upload photos while typing this but Blogspot failed me. Sorry, I will have to try again some other time.