Cookies & Milk For Santa, Carrots For The Reindeer

1st Photo With Santa

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Update

The ice from the aforementioned storm has passed but now we have a few feet of snow on the ground. Bill spent all day last Friday shoveling to try to keep up with it. It is definitely a white Christmas! Tonight we have to wrap presents and put out cookies and carrots. We thought about going to church but Aidai really needs to be in bed by 8:30 and the service is at 7pm and 30 minutes away so this year we are going to forego it. Aidai knows that Santa is coming and bringing presents but we don't think she really gets the concept of any of it. It'll be fun to see her tomorrow.


Work is finally settling down for me. The past month has been crazy since I was handling all the Holiday support. Now I have a week or so to do some office clean out and organization and then it is time to start planning events that are scheduled for the spring.



We have had more doctor's appointments. Aidai is now the proud wearer of a brace and orthopedic shoes. The brace goes up mid calf and goes on with Velcro over a special sock. Her shoes open up in the back (they are called Hatchbacks) which makes it easier to get them on over the brace. I don't have any photos of hers but this is what they look like. These are these exact shoes but her brace has hot pink straps.

The brace keeps her foot flexed and prevents her ankle from turning in as much. With it on she seems to put weight on her left foot and doesn't fall as much. I don't know what we will do about snow boots. She might have to just get boots to wear without the brace.

The brace and shoes are the result of the orthopedic doctor whose bedside manner was about what I expected for a surgeon who evidently walks on water. They took xrays of Aidai's and determined that a bone in her right foot that was supposed to be at a 15 degree angle is at a 15.7 degree angle. That same bone in her left foot is at a 37 degree angle. There is also another bone in her left foot that has issues. She will need surgery at age 6-7 to correct the angle of the bones. After he said all of this, and never saw her walk, I asked what we could do now and he said that we should do nothing because her legs weren't bad, she wasn't having pain or loss of function. So I promptly told him that she fell all the time and he was like, "this is not bad, I've seen much worse". Now I don't really care what he has seen, I want my daughter helped so I told him that we'd be back in his office shortly after she breaks something from falling all the time. Bill started getting Aidai to walk and the doctor started watching her and he's like "hmmm, she really doens't put any weight on that left foot, maybe a brace would help". Of course I'm thinking, DUH! So he sent us to the orthotic people who were WONDERFUL and got us all set up with a brace and shoes. The orthopedic also said that she needs PT for educational reasons and a neurological eval. He doesn't feel that the reason she was so late in walking (3 years) and is so off balance is totally due to her bones so today her doctor gave us a referral to a pediatric neurologist. To be honest, we don't really care what is wrong with her leg but in order to try to help her I guess we need to find out the cause.

Today we went to the regular family doctor, they take really good care of us there. They retested her urine, which had a small amount of protein in it before, and this time it was negative so no concerns there. Aidai has gained 3 pounds since she has been here, she now weighs 43! They also gave her a MMR booster and chickenpox vaccine. She screamed and screamed, it was like the first bath all over again. It took 4 of us to hold her down for the TB test in her arm. The other two were done first and in her legs (where she couldn't see and didn't know what was coming) so it only took 3 of us for those. We have to go back on Friday afternoon to get the TB test checked.

We meet with the school again on the 9th and we are hopeful they will decide she needs OT/PT and Speech assistance. We are meeting with the day care provider next week and will hopefully start the transition to care early in the New Year. On the 9th we also have followups with the eye doctor and the orthotics.

Finally, today marks 2 months since my mom and I returned home with Aidai. There have been many a day in which I have pulled my hair out because of her challenging behavior and the logistics of school, work, doctor's appointments and all the other things that need to get done but we never seem to have time for (like thank you and Christmas cards for example). However, there have also been many moments that I have just looked at her in amazement. I can't believe that she is actually here and that someone calls me Mama. In some ways it seems like she has been here forever so I have to keep reminding myself that it has really only been a short amount of time and that we have a long wonderful journey ahead. She is such a special little girl and we just absolutely adore her. We are looking forward to our first Christmas together and all the other firsts to come in the future.

Merry Christmas/Happy Holidays Everyone!

Elizabeth

411 Trouble

So guess what happens when your phone number is the town gas station's old fax number. Normally you get a few calls a week from a fax machine trying to fax and an occasional person. When 300,000 people (mostly in your surrounding area) have no power and need a gas station and the 411 computer gives them your home number as the gas station's phone number, you get about 50 calls in one day. I am thinking about changing our answering machine "This is not Irving but as of 12/12 at 8pm they were open and pumping gas".

Bill Feels Like Ranting

Hi Faithful Followers

Various situations in my life have caused me to be swayed politically to the left or right of center, over the years. Having grown up and gone to college in Vermont has definitely pulled at my left, yet my years in the trenches in construction, fending for ones self, has had a tug towards the right. I don't feel that I'm owed anything, yet I feel that one should follow the laws of our land as they are. Wouldn't you think that if you had a child, born in a far away land, raised by a caring few with little resources to offer, who by all standards functions, for the most part, almost years from where she should, that the schools to whom you've paid taxes to for years, would willingly offer to her what she needs to function amongst her peers. I'm not asking that my daughter be set up by the state to never have to work, quite to the contrary, I would like to see the state offer her the tools, mandated by our federal government, to have the ability to work towards whatever ends she wishes. No longer do I need or want somebody from the medical trade or education to tell us how cute or wonderful Aidai is, we need people to stand up and say she needs occupational therapy, physical therapy and speech therapy. For those of you who know me very little, if at all, I was born with a cleft palate, I have spent many hours, from preschool, into middle school with speech pathologists, learning how to recreate sounds that physically I can't do as most of you can. When I was told to my face that Aidai would learn sounds by watching us, I just said, "excuse me, here's my history, how bad do we want to mess her up?" Also, when we're in the office of one of the best orthopedic specialists in the state, that I have to suggest that he sees her walk, after he's already seen her x-rays and made his diagnosis,baffles me, in nature, art and construction, there is a correlation between form and function. "This is not easy, it'll be a long road, I have nothing to offer you today, and I'll see you in six months" doesn't work for me. I know we can't get everything fixed right now, and we're more than ready to do whatever we need, we're not looking for anything that shouldn't be offered outright to us and her. For those of you who know Elizabeth, you know not to cross or push her, I'm not as much so, but I'll tell you this, try to keep something from one of my kids or someone else I love, and you might as well corner a wild animal. The last thing we want is a battle with our school district, we know full well, it's a battle we'll win, but why would they want to go through that??? Democrat/Republican....who knows if it really matters anymore.....strong families, strong, bright, enabled young people, that's our future....when I tell Josh that there are people who want to keep his sister from getting what she needs, he'll be PISSED.....then he'll pick her up in his lap and teach her a little more guitar. Josh for President, that's what I say!!

Hangin With Beck

Last Saturday we went to the NH Children's Museum with Beck, Morgan and Mala. Aidai had a good time though and it was fun to see her interact with Beck. They had their first date in the cafe at the museum. She adores Morgan too! To see more photos check out Mala's blog.