Friday, January 29, 2010

Sharing some cuteness

Sharing some cuteness, got lots more - but these are just a few from today :)

Wednesday, January 27, 2010

Is she a twin?

The probable reason for Cora's plagio is the fact the she also has Torticollis. In a lot of tort cases, it has to due to the position, or lack of space in utero.

One of the reasons for lack of space in utero would be because of a multiple pregnancy. So, this of course would be a very common question to ask when someone is Dx with tort.

"Is she a twin" was asked of me the other day at Cora's DOC Band evaluation. Sounds like a pretty easy question to answer, right.

Well, yes - I guess she is/was a twin. Obviously, her twin had nothing to do with her tort. Her twin was lost around 7 weeks. And even though it stuck around taking up space for my ENTIRE pregnancy, it really was not taking up any real amount of space.

But, to be totally honest, I really have not thought too much about the fact that Cora is in fact a twin. Or, rather WAS a twin.

I am a very open person about my journey, our struggles, etc. And, I am sure way down the line we will tell Cora how hard we tried to have her. But I doubt I will tell her all the time starting now. We do this with Lil J - tell him all the time about his story, that he has 2 moms, how we love having him in our family, etc. I really don't see the need to tell Cora that she was a twin, one that I never even knew about until it was already gone.

Is it part of our story - YES, but I guess I usually just group it with everything else, as part of our struggle, not as a part of Cora.

I say a lot (well at least when I was preg), Oh, we lost 5 preg in 2008 and lost a twin with this one. I would never say to someone who is meeting Cora for the first time: Oh this is Cora, she is a twin, but her twin was lost in utero.

I am just rambling, whatever. It just made me think about it

Tuesday, January 26, 2010

Cora is getting a DOC Band

The past week have been filled with appointments with Physical Therapists, and other doctors. She was evaluated yesterday at a cranial remolding specialist.

Turns out, in addition to the flat spots on her head from the torticollis, her face was being pushed forward on the left. This was making her forehead protrude, her eye become a little sunken, her cheek appear larger, and make her ears misaligned.

She was offiicially diagnosed with "increased head height, sloped forehead, left pareital occipital flattening, right frontal flattening, left eye and cheek anterior to the right, left plagiocephaly, left (more than right) brachycephaly, increased head width"

Treatment is with a device called a DOC Band. Basically, it is a very lightweight plastic band that is a perfect mold of Cora's head. On the inside of the band, there is foam (not soft foam) that applies gentle pressure on the "bad" spots and over time, it remolds the head into the correct position. Every week, the foam is shaved and after (hopefully) 8-12 weeks, Cora has a perfect round head.

There are a few downsides to this - well, other than the OBVIOUS one that she has to wear it. The closest place is really far from us. It took my almost 2 hours to get there. We will have to go every week for an adjustment. But, the biggest downside is the fact that is will cost $4000, plus of course the cost to travel back and forth every week. And, insurance will not cover 90% of it. Guess we are not getting a new chimney this year.

We will probably have our appointment this week or next week for the actual molding, which is done digitally. And then it takes a week to get the band. I already bought some stickers for it :)

Monday, January 18, 2010

Torticollis and Positional Plagiocephaly

Cora has been Dx with Torticollis and Positional Plagiocephaly - basically her head tilts to one side due to a short neck muscle. Well, because of the tilt - she also has a mis-shappen head on that side (plagiocephaly).

The short and tight muscles is probably due to her position in the womb. But, since it was like this since birth (you can see it in early pics), she could have also developed a "habit" of tilting her head. So, part is because her head just goes that way, and then part is she just gets in the habit of keeping it that way, and then doesn't like to move it the other way.

Because of the fact that she could be developing a habit, it is best to try to correct it as early as possible.

She has started PT this week. The PT can not tell me how long she will be in therapy, since every kid is different. She also gave us a lot of exercises to do at home, most are incorporated into playtime - making sure that we put toys on the other side of her tilt.

But, my doc has not said anything about the flat head. I have heard people tell me to go out on my own and see a doc for the flatness. I know my insurance does not require a referral - so I will probably do this

If you child has torticollis, can you please let me know your experiences (PT, DOC band, etc)

I am trying not to freak out about it - and I think I am doing a good job of not googling too much :) The PT said it is not too big of a deal, and neither did the doc.

So, for now, we are doing PT 2x a week. And, I will also call Early Intervention as well

Sunday, January 17, 2010

Cora's Head

I wanted to share some pictures of Cora's head. For 2 reasons. One - I have been very open about everything on this blog, and this should be no different. Two - it really helps me document everything about her head - so if I need before and after things, I have them.

If you did not read my previous posts, we had Cora's 4 month doc appointment. We noticed that Cora's head is almost always tilted to the left. She has done this since birth. At first we did not pay that much attention to it, as we just thought it had to do with lack of head control. I probably would not have even mentioned to the doc.

My mom, on the other hand, was insistent that I bring it up. If you actually go back through all my pics, you can see that her head it always tilted. And if it is not, it is because she is wedged in the couch cushions.

We also noticed that her head is a weird shape.

Turns out that her head shape is probably due to the head tilt thing.

We go to the Physical Therapist in the AM, I was given some medical terms - but I will not post them here until we get an actual diagnosis.

But, here are some pictures of her head tilt and her wierd head shape. You can actually see that from the front it might not look like that big a deal. But from the back - - you can actually see that her one ear is actually tucked into her shirt, while the other is far away from it. Oh - and ignore the ugly birthmark on the back of her head.

Sadly, her dead is like that 99% of the time. I tried to get her to smile, but it was getting late in the day and I was also trying to hold her with one hand.

Planning Kids Parties is So Much Fun!

So, I had to compromise about Lil J's b-day party. But, it is still going to be nice. I wanted a big party with all of our friends and close cousins, and of course family. My husband just wanted us (meaning the 5 of us) and maybe my parents and his parents.

So, we met kinda in the middle and are just having us, parents, siblings, and siblings kids. That number is still 35 - yup - we both have HUGE families.  And to be honest, we are having it at our house, so anymore than that would have been pretty tight.

Plus, it is cold up here in the North East - so everyone would have to be IN our house.

Frank did make a good point - in normal situations, a kids b-day party would be just that - KIDS.  And, more than likely it will be like that for future birthdays.  So, it was a nice compromise.  We can save the big party for when his adoption (fingers crossed) goes through.

Anyway, I have been having a blast planning the party - which right now is just in the planning stage. I used to LOVE doing it with Colin.  Each year was a different theme and I would make decorations, kiddy favors, make up games, make the cake, and even made my own pinatas.  It is amazing how far a pad of construction paper can go.

Of course, Colin has not let me do it in years, so it is fun to be able to do it again with Lil J.

For Lil J, the theme will be cars, not cars the movie (which he LOVES), but more like general cars. I figured it would be easier to create things in the general theme, than only with the movie stuff.
So, yay for kids parties :)

The party is not for another month, and I still have lots to paln, etc.  I will of course share pictures of everything that we do. :)

Wednesday, January 13, 2010

Cora is 4 months old!

We had Cora's 4 month appointment today.  She is a big girl.  She weighed 15 pounds even (up 8 pounds since birth) and is 26 inches long (up 6 inches since birth)!  Wow, I knew her pants were short - but now I know why lol.

We have to do some follow-up stuff on her - nothing to freak out about, but stuff that needs to be looked into.

There have been a few things that I have noticed, and my mom noticed as well.

The first is her head.  She almost always tilts her head to the left.  My mom brought it up to me a while ago, and to be honest - I really never noticed.  I actually thought she was crazy.  Until, I looked back at pictures and really paid attention to her.  Well, she also has a lop-sided head.  The doctor does not know if her head is lop-sided because of her head tilt, or the head tilt is because of the shape of her head.

Either way, he said the muscles in her neck are very tight and we need to be evaluated by a physical therapist.  He does not think it is anything big deal.  And, nothing some therapy won't fix.

The other things are kinda related.  When playing with her, we have noticed that one of her hips is super stiff.  This happens to be the same leg that we thought was forever crossing over the other and we thought was bowed.

She can basically eat one of her feet, but the other leg does not even come close. 

In addition to the leg, she does not seem to bend too well at the waist - she is almost standing when we burp her, and anytime she is "sitting", it is not an a 90 degree angle.

Well, again - she has tightness in her hip.  the doc was not too concerned about the "not bending" thing.

Both things can be fixed by the physical therapist (well, I hope so).  And the doc said the lopsided ness of her head should just correct itself.

I have to take her 4 month pics later today, I will post them when I do :)

Wednesday, January 6, 2010

Fun with Hats and Headbands

Wow - bad blooger. Our Intent to Adopt Letter

Wow - I am a bad blogger.

Lil J's case was changed to adoption. It really does not mean a heck of a lot, since bio still can work her plan. But with this change, we get another caseworker, and the time in our house then counts towards the minimum required time before adoption.

We had to submit a letter, basically putting it on record that we would like to adopt him.

Here is my letter. I did not delete the things that are specific to him, as it really does not have anything to do with his case (there is a lot more that I did not include in this letter, but in previous letters) I did delete the things that have to do with his mother.

I tried to keep it half "formal" and half casual - but not too sappy

We, the undersigned, are resource parents for Lil J . Please accept this letter as our official request to be considered as adoptive parents of Lil J.

Lil J was placed with us on March 11, 2009. On that day, he not only became part of our home, but part of our family. Therefore, we are requesting that the courts legally declare what we have felt in our hearts since day one.

At the time of his placement, Lil J had some behavior problems. One of which was severe food issues. He would eat large amounts of food and would cause himself to choke after almost every meal. Lil J was also climbing into cabinets, attempting to eat food out of the trashcan, taking any food within his reach, and eating anything he would find on the floor (crumbs, dirt, hair, etc).

Since he has been in our home, we have worked very hard to resolve Lil J’s food habits. He has come to understand that he will be fed on a regular basis and are pleased to say that he has made major improvements in this area.

In addition to the food issues, when Lil J was first placed with us he would throw a fit if you asked him to say please. When asked to say “Please”, he would scream, “NO” for about 15 minutes and would throw himself on the floor. It was very clear that, prior to living with us, he had some bad experience with this request.

Since in our care, we have used positive reinforcement with all manners and now Lil J is becoming a very polite child. It is something that we are committed to reinforcing throughout his life, and plan to teach him how to be a true gentleman.

We thoroughly enjoy having Lil J as part of our family. We have included him in all family activities and celebrations. Lil J loved meeting our VERY large extended family. In fact, we have almost 100 aunts, uncles, cousins, grandparents, nieces, and nephews that have welcomed him with open arms.

We have also taken trips to amusement parks, zoos, museums, and even spent some time on vacation at the New Jersey Shore. We plan to continue these excursions in the years to come and look forward to having Lil J make lasting memories with our family.

Our 15 year old son, Colin, really embraced the new role of big brother to Lil J. Lil J counts the minutes until he comes home from school and runs into his arms each and every time.

We also have an infant daughter, Cora. Cora was born in September 2009 and Lil J loves her very much. He had no problems giving his love and affection with the newest family member. He is very sweet towards her and never expressed any jealously issues at all.

Our family, including Lil J, has made so many changes since March 2009, and we would not change one minute of it.

If reunification with his mother is not possible, we would be honored to be considered as a permanent, adoptive home for Lil J.

Enclosed with this letter are several pictures of taken since his placement in our home.

Respectfully submitted,
Related Posts Plugin for WordPress, Blogger...