Friday, October 22, 2010

Two more sweeties coming home!

My great friend, Michelle, and her super-husband, Keith, are leaving tomorrow to bring home their beautiful new daughters from Ghana.  Please pray that they have a safe, uneventful journey - it's been a long time coming for them.

Thursday, October 14, 2010

Another fight, a milestone and fall fun

I'm on a mission to have Synagis covered for M this season.  She got it last season because she was a 25wk preemie under 12mos old.  Now she is almost 15mos and while still gestationally under 12mos, MA says she doesn't qualify.  Some of the conditions that DO qualify are cardiac problems, lung disease, congenital airway conditions, neuromuscular conditions, etc.  Hmmm.....subglottic stenosis, subglottic cysts, strider, cerebral palsy, hydrocephalus, epilepsy, infantile spasms, and extreme prematurity - I would think one (or more) of those things would fall into a category.  I, however, seem to be more logical than insurance companies.  So, yet another battle ensues.  At $1500 PER SHOT (it's given monthly for six months), we just don't have any way to pay out-of-pocket for it.  I feel like such a failure that I can't give my fragile daughter this simple protection.

In happy news - M hit a milestone, sort of! Yesterday, she was napping in the living room. I heard fussing so I came in and this is is what I saw. Okay, not exactly this. Despite her distress, I ran to get the camera, rolled her back over and waited a second to see if she'd do it again. I know, mean mommy! This is her first official solo roll!! 


We've been having a great fall.  The weather has been incredible and we've made it to Pumpkin Farms and have been able to play outside a lot.  We're headed up North this weekend for a party with friends.  Here's a few photos of our recent fun and of some of M's new gear.

Two weekends ago at one of the many Pumpkin Patches we've visited - it was COLD!

The Otter - M is LOVING it!  She can finally enjoy a relaxing, SAFE bath! 

Last weekend's "Boys' Camp Night"


M's new rig - it is so great!

Another Pumpkin Patch - warm this time! 

Is this not just a really cool picture? 

Tuesday, October 12, 2010

"Secretly Disabled"

I've had a post sitting in my "to be posted" list for quite some time now.  I keep going back to it, re-reading it, editing it yet again.  Somehow, I can't get it just right.  No matter what I write or how I write it, I can't find the words to express what I'm trying to say without sounding whiny or complainy.  Just yesterday, a fellow blogger, Matthew's Mommy, posted on the same subject.  She referenced another blog post that you can (and should) read HERE.

Basically, these moms have hit the nail on the head.  We have been parenting a "secretly disabled" child for just under a year now.  She is cute, cuddly, beautiful, sweet and, not so obviously, disabled.  You cannot see the dozen scars on her head or the two shunt bumps and tubing.  Her central line is hidden by her shirt as are all of the scars on her chest and abdomen.  You can't see the scars on her neck because of her super-cute, chubby chins.  You can't tell that her left arm and hand don't work.  You can't tell she has Cerebral Palsy.  You can't tell that she has Epilepsy and significant neurlogic damage.  Her nystagmus causes her eyes to be in constant motion which outsiders take as her "looking around at everything."  Anytime EVERY time we take her out anywhere, there are comments, whispers and curious glances.  "Oh, she's so sleepy."  "Isn't she walking yet?" "What's wrong with her eyes?" "I can't seem to get her attention."  "Maam, we don't allow strollers in here."  I could go on and on.  Although ignorant and hurtful comments do drive me nuts, I'm more bothered by the people who stare or whisper and don't have the guts to ask a question.  Now that we've got M's wheelchair, it is slightly more obvious to people that she may have other issues, although many people think it's just a really fancy stroller.  In a way, it has helped "out" us.  While I don't give a hoot what other people think, it's exhausting to constantly have to justify and explain things.  M cannot sit in a high chair, a booster seat or a shopping cart.  She's too heavy for infant seats.  Basically, without her wheelchair, we cannot take her to a restaurant or a store unless we hold her the entire time - not fun for her or us. 

My desire to write this post was driven by my sheer need to just get it off my chest.  However, hopefully there's a little bit of education here, also.  Hopefully when you're out and about you'll remember that people are so very diverse.  Everyone is dealing with something.  Don't make assumptions and if you have a legitimate question - ask it! 

Tuesday, October 5, 2010

Vision Evaluation

Today M & I had the pleasure of meeting with two individuals from WCBVI.  I learned so much in a very short amount of time.  Hopefully they'll get their report and notes out to me soon because certainly there are things I have forgotten already! 

What we discovered is that M does indeed have one, tiny area of functional vision.  It is, as we suspected, in the lower, right periphery.  She actually appears to visually engage in that field up to four feet away.  She has zero functional vision closer than about 4 inches, zero to the left, zero upward, and zero midline.  She "shuts off" her vision any time she is presented with a challenge and anytime she is startled or uncomfortable.  They also noted she appears to possibly have some cortical-auditory impairment and are working on a referral for that evaluation.  Basically what all of that means is that her eyes and ears are perfectly normal, but the pathways used in her brain to process information are not working properly.  The good news is that with training, these types of impairment CAN improve.  She will likely never have 100% functional vision.  She will always have an impairment.  However, with a lot of hard work, she COULD get to a point where visual input could be a part of her life. 

The most valuable thing I took away from our meeting is a sense of what living life without vision is like.  I learned how M should be handled, approached, talked to, touched, introduced to people/things.  I learned that she deserves and requires a lot of respect in terms of her personal space and her desire to do (or not do) things. I was reminded that it's okay for me to remind people that they should ask permission before approaching my child.  I learned about some of the things we're doing right and a lot of the things we could be doing better for her.  Truth is, there is a lot we need to learn and some changes we need to make.  We definitely need to slow down A LOT!  I learned about hand under hand assistance, dandy hands, calendar systems, and passive transport.  I learned about synapses and senses.  There are so many things we can do in the present to help improve her future. 

I will make it a point to try and share some of the techniques we try and the outcomes for those of you with CVI kiddos.  I welcome input and suggestions as well!

Monday, October 4, 2010

20!

Check out my ticker waaaaay at the bottom of the page.  I've been waiting for sooooo long to hit that milestone!

Friday, October 1, 2010

Another Great Article

Thank you, Laurie!!

Kyrgyzstan: American Adoptions Still Stalled


September 30, 2010 - 1:55pm, by Laurie Rich

There’s a tiny grave near an orphanage on the outskirts of Bishkek. It holds the body of an undersized 2-year-old girl who died in August from complications of a disease that is dangerous, yet often manageable in the United States. The little girl, who had been matched for adoption with a Florida doctor, is a casualty of a moratorium on international adoptions imposed long before Kyrgyzstan became engulfed in turmoil this spring.


The dead girl’s adoption, along with those of 64 other Kyrgyz orphans by American families, had been stalled for roughly two years. After protracted talks, officials on both sides are optimistic that the adoption logjam will finally be broken -- but they all concede that the issue will ultimately need to be resolved by the Kyrgyz legislators who are elected in the nation’s October 10 parliamentary elections.


“The parliament will be back and (proponents of completing these adoptions) have quite a serious lobby there,” Kyrgyzstan’s provisional president, Roza Otunbayeva, told EurasiaNet.org on September 23. Otunbayeva was in New York for the 65th United Nations General Assembly.
Kyrgyz officials are currently reviewing a memorandum of understanding (MOU) prepared by the US State Department that, if signed by both governments, would expedite the adoptions of the 64 orphans. Ambassador Susan Jacobs, The State Department’s Special Advisor for International Children’s Issues, presented the MOU in mid-September to different Kyrgyz ministries during a special trip to Bishkek.


Jacobs said that once both governments agree on the document’s language, the MOU can be submitted to the new sitting parliament in Kyrgyzstan for approval.
"We're hoping that we can get this done before the end of the year," Jacobs said. She acknowledged that the disabilities and developmental delays of many of the children added an element of urgency to the process. “While these children were offered for domestic adoption, they were not adopted. So they were institutionalized. These are tough cases; these children need to be in a loving home."


Time means the most to the prospective adoptees in need of medical help and therapy. The younger they are, the more effective surgeries and therapy can be. Carrie and Bob Delille of Virginia are trying to bring home one of the oldest children in the group of 64, an 11-year-old boy with a cleft palate and possibly a bone condition. The palate issue means the boy basically has no roof to his mouth, makes eating difficult.


“If this [adoption] process had gone the way it was supposed to, he would have come home a year earlier,” Bob Delille said. “Instead, here he languishes in an orphanage undernourished, with no surgery, and with rickets.”


According to local news media, the MOU has Kyrgyz support. Feruza Dzhamasheva, chairwoman of the Supreme Court, met with Jacobs on her visit and “expressed readiness to co-operate in achieving an aim, because Kyrgyzstan is also interested in helping those children to join their families,” Kyrgyz news outlet 24.kg reported.


Drafting the MOU was a Kyrgyz recommendation. A delegation visiting the United States in late August suggested that the United States create an agreement as a way to restart talks on the issue that had languished. The Kyrgyz officials requested two specific provisions be included: that the children retain their birth citizenship after adoption and live as dual US and Kyrgyz citizens; and that the government receive a yearly report on each child until his or her 18th birthday.


Keeping tabs on local children adopted by foreigners is a sensitive issue in the former Soviet Union. Reports of Russian orphans who’ve died since being adopted internationally have stoked fear about the process in the region, as did the incident last April when a Tennessee woman relinquished her adopted 7-year-old son by placing him alone on a plane back to Moscow.


The Kyrgyz government is currently rewriting its laws on international adoption to address these concerns and to try to reduce corruption in the system. The MOU would only resolve the 64 pending cases. A moratorium would remain in place on new foreign adoptions from Kyrgyzstan until new legislation is enacted.


After two years of starts and stops, dozens of unfulfilled promises from governments and adoption agencies, and political upheaval in Bishkek that nearly unraveled all their efforts, some of the 64 families are guarded when discussing the MOU.


“We have to manage our emotions,” said New York resident Frances Pardus-Abbadessa, who, along with her husband, Drew Pardus, is hoping to adopt a 3-year-old boy. “As much as we want to get excited, there are still too many potential barriers that could cause this wonderful timeline to go astray.”


As time ticks on, the story of the two-year-old girl’s sad fate sits in the back of many waiting parents’ minds. The girl’s adoptive mother, a Florida pediatrician named Suzanne Bilyeu, was the first to diagnose the child’s advanced hydrocephalus from photos she received in March of 2009, seven months after she was originally scheduled to bring the girl home. This led to two in-country surgeries, the second of which was this summer. The girl died a few weeks after that last procedure, on August 9.


“She’s what we’ve all been so afraid of, what we all thought could happen,” Bilyeau said, discussing the fears of the families as they wait thousands of miles away from the children they hope to bring into their own families. “She undoubtedly is in a beautiful place. It just seemed like such a preventable loss.”


Editor's note: Laurie Rich Salerno is an editor for Patch.com. She lives in Meriden, CT.