Saturday, December 31, 2005

Best New Years Gift Ever

Peanut WALKED up the steps!
No kidding, she did it FOUR times, going up SEVEN steps, holding onto the therapists fingers for support, she ALTERNATED feet up the steps. Not only four times, but then we tried her at crawling up the steps...she did that too! The little stinker had been holding out on us this whole time! We have been working on this for months and it finally pad off!
This all started when I got a call yesterday in the early morning from Peanut's Physical therapist. She had originally cancelled her appointments for the week due to the holidays, but came home early and wanted to know if she could come today. SO she came, and boy was it great that she came!

Happy new year everyone..i'm entering 2006 with high hopes and on cloud nine!

Monday, December 26, 2005

Holiday Wishes

Pretty boxes, pretty bows,
All stacked in nice neat rows.
I tear open one.
I rip open two.
I don't think I was supposed to!
Each day comes bearing its own gifts.
Go ahead, untie the ribbons!

Happy Holidays and a Happy New Year to All!

Tuesday, December 20, 2005

Out of the Mouth of A Babe

Tonight at dinner my son James suddenly stops eating and grabs his ears. He starts crying and says something of bunnies. My husband and I look at each other and say what? James looks at us and says "Bunnies in mines ears!" James' ears are hurting so instead of telling me his ears hurt, he tells me there are bunnies in his ears!

PS The ENT we see is always telling my kids he needs to check to see if there are any bunnies in their ears..of course there never are, but I think it stuck in James' mind that bunnies must come to live there when you have an ear ache.

Sunday, December 18, 2005

Into the Looking Glass...

Lewis Carol made this famous in his novel The Adventures of Alice in Wonderland, when Alice slips into the rabbit hole looking for the white rabbit. She discovers many friends in various forms from accordian owls to nomeraths that you must not step on. As children there comes the moment in time that you discover yourself in the mirror, what a magical time it is! You're sitting there, minding your own business, when suddenly you realize you are not alone. There is someone else sitting right in front of you doing the same thing you are. What a moment of awe and wonder as you try to touch the other person, take their toy and give them a kiss. Shockingly, they repeat all the same moves as you, yet you never touch.
Peanut made her way into her looking glass yesterday. She has made this journey before, but not to the extent she has now. It all started when I came up into my room to check my email. I placed Peanut on the floor next to me for a second, as she has discovered the keypad. About five feet away from where she is sitting is a wall of closets with mirrored doors. In one corner are some toys I keep hidden for her to "find" and play with. As I type, she butt scoots, ie hops on her bottom, accross the room to the mirrors. She looks, touches, leans forward to taste and bumps her head. Startled she pauses, looks back at me and says "Baba". I said yes, you see the baby in the mirror! She looks again, then scoots over to her toys, and begins to play with them. As she plays, she begins to share with the baby in the mirror. She claps, talks and tries to hand a toy off to the baby. It was so cute! The funniest part was today when I came back in the room to fold laundry, and put Peanut on the floor, she went right into the corner and started to talk to the baby in the mirror. She must think the baby lives in that corner now. So I feel comfortable saying that Peanut has stepped through the looking glass and has discovered a new world within her own. Amazing!

Wednesday, December 14, 2005

What Would You Say ?

I got a call two nights ago from a friend of mine, lets call her Abigail. She was looking for the title of a book about a child with DS. I was curious, as to why she was looking for this title, as she really never showed an interest in Peanut or the DS. Abigail told me she wanted it for her friend who had had a "Down syndrome baby in Trenton, NJ". She said that the girlfriend needed some good reading. Instead of the book she had called me about I recommened another title, The new parents guide to Down syndrome, as it had more relevance and was quite abit more reputable. Abigail then asked me what she should say or do for her friend. The DS was a surprise and mom is very upset. So it got me thinking back to when I had Peanut. What would I have wanted to know about or have had said to me to make me feel better? My first thought was congratulations! You could not even begin to imagine the number of phone calls I got that sounded more like condolence calls then new baby welcoming calls. Let me tell you how depressing that was! It was such an insult to my family and to me.
The other thing I would tell a new parent would be that people are stupid. They say stupid things when they are unsure of what to say. That it is so important to treat people as if they are stupid and you need to educate them about DS and what it means. Without the education people mean well, but can really insult another persons feelings. So I guess the underlying theme would be to give the benefit of the doubt. Assume that people meant well, even if it might have come out wrong.
Ok, so now I pose a question to you: if you could go back in time to when you first found out about your childs DS, what would you have liked to have heard? What could someone have said, or did say, that would have been so helpful to you?

Sunday, December 04, 2005

Personal Care Homes - The Future?

Today's newspaper headlined "The Fraying Safety Net: Retarded spill into loosely monitored care". The story was about how many metally challenged, or as the article constantly referred to them as retarded, are being pushed onto family members out of group homes. It went on to speak about how the family members are being burdened by the state not helping with any costs. With all the new changes in Medical assistance many people who had been receiving help will now be forced to pay for much of their medical needs or be faced with no care at all. That in and of itself is a big issue for those of us with children or any family member with a disability. It seems that many of the people in charge of the decisions up on capital hill have never been personlly touched by a person with a disability. Unless you have lived it, you just don't understand. Now imagine adding on what I am about to tell you about.
The thing that really bothered me about this article the most was the fact that many of the personal care homes where people with varying degrees of mental disabilities are being housed with convicted sexual offenders. Yes you heard me right. Sexual offendors are being housed in the same building, and some in the same room, as those who are challenged. The article went on to mention how many of the "retarded" were fine with these arrangments (never mind the fact that they may not understand what is going on). To add insult to injury there was a case of one woman who was mentally disabled living with a convicted sexual offender, AS A COUPLE. Perhaps this needs to be looked into. It sounds a little off to me, don't you think? It bothered me because people in power, The Advocacy and Protection officer from the states Office of Mental Retardation, meant to help watch over people with disabilities, were quted to be concerned with the saftey and protection of the residents. Well, if they were concerned they should not have mixed a high risk group with such offenders! The article continued to tell of numersous abuse, neglect and deaths in various personal care homes in and around the area. The system, while set up to help, really allows many individuals to fall trough the cracks and get lost if they don't have someone with a vested interest in that persons well being.
I guess the upshot for me was how important it is for all of us to have a will to clearly spell out what we want and don't want. I certainly am concerned about personal care homes and group homes too, I hope we never have to put our child out in the world in such a vulnerable manner. I also have to agree with my husband, BStrong, who earlier in a post had mentioned us looking to buy a house with a carriage house out back. That way Peanut can have the independance she needs and yet we can keep a close eye on her too. Truthfully, I really can't plan for the future, as no matter where any child or adult with a disability goes, they are more vulnerable. I also may be worrying uneccessrily as Peanut could very well grow up and get married and surprise us by all she can do...only time will tell, but I sure wish my crystal ball would work as it would surely decrease my stress levels....In the meantime, my heart goes out to all those people who are sutck in such horrible situations.

Thursday, December 01, 2005

Speed Bumps

We have been moving along so quickly, traveling and growing and changing, that it seemed nothing could stop us. We were on a roll but we were headed for some speed bumps. Peanut had had a sleep study (polysomnogram) done the beginging of the month, which we never heard anything back on. I assumed that that meant everything was fine, until Monday of this week. I got a call from the Down Syndrome Center regarding a message I had left about an entirly different matter. While reviewing the finer things in life, aka Peanuts Poop, the sleep study was brought up. The NP, Nurse practitioner, wanted to know where things stood with the test. I told her we hadn't heard anything so as far as I was concerned. Apparently the pulmonology department, being as short handed as they are, had allowed her study to fall through the cracks with no follow up. She had had 107 obstructive hypopneas (when your oxygen level drop) which is not a good number. However she never retained any Carbon dixoide (called hypoxia). Her O2 levels droped a little, but only for a small percent of her sleep time. At times I think that these studies a a little too much information. That we are looking for things that we might otherwise never know about. In the mean time they sent over a SPO2 monitior (measures the pulse and oxygen levels), as well as a couple of tanks of O2. Just in case.
So while chasing that around they decide she needs to have an adenotonsillectomy (remove her adenoids and tonsils), and see cardiology because there was an irregularity in the heartbeat from the ONE EKG lead (may be a bad lead). I decided to have her x-rayed for the adenoids before seeing ENT so as to expidite the process (ie rule out surgery or rule it in depending on what they see radiologically and clinically). I also decided that if I am going in for x-rays I might as well have them look for atlanto-axial instability (instability of the c1 and c2 vertebrea that is common in 10-25% of children with DS. They have a weakness in the joint that can increase the likelihood of damage to the spinal cord.). I wanted it checked for two reasons, first we usually check arond age two and second apparently during the adenoid surgery the doctors position the head in such a way that if you have the instability it could cause a problem. Just clearing all aspects. I got the call today that she does NOT have the atlanto-axial instability (she has 3 mm and instability is marked by 4-5 mm betwen the vertebrea (we can do horseback riding!(hippo-therapy)), and that her adeniods and tonsils look normal in size. I see ENT tomorrow so will have a better idea tomorrow , but for now I can rest easy...i think. I have the Pulse/Ox monitor on Peanut , so far she is ok, although I think it is not the best lead, as her heartrate keeps dropping. I'll keep an eye on her tonight and see what happens.
We had her six month review for EI today (early intervention). She has come a long way Baby! We were able to cross off a good number of objectives and had to come up with new ones. Hooray!
So that's the news from the homefront, speed bumps in the road, but we are hoping for smooth sailing once again (knock on wood and all that jazz).