Thank You Corey - Thank You Heartline

Our family won an amazing raffle prize over at Watching the Waters. Corey has been hard at work raising money to support Heartline and their goal of getting an ambulance to better serve the community and their medical clinic in Haiti. Below is my Thank You Note to Corey. If you too feel thankful for the abundance of quality medical care avaiable to us here in the United States, then please hop on over to her site, learn more about Heartline and GIVE BIG.

I wish I wasn't so technologically challenged, then I could post a proper link....sigh...

http://watchingthewaters.wordpress.com/


HOLY SMOKES COREY!!!!!!!

A bazillion thanks...I tried to write a respectable thank you on your blog to express our appreciation of Heartline Ministries and what they are doing in Haiti (and trying to do even better if they only had a stinkin ambulance for cryin out loud.....) Our foster baby, "Baby Dee" has recently been dignosed with Cornelia de Lange Syndrome...thankfully diagnosed - because now there is a blueprint of protocols of care and a way to help her stay alive, get healthy and GROW.

But the clincher for us donating to Heartline is that we realize just how blessed we are to live where we live and have access to the best medical care even in our humble rural corner of our fine little New England State..and without that care (and the team of 17 professionals providing for Baby Dee's care) we know we would NOT have a baby to oooohhh and aaaaahhhh over.

Sadly, I know many Haitian Moms and babies do not have the same opportunities we have here and I am so grateful there are amazing folks like those at Heartline, and you for fundraising and spreading the word.....

Thank you Thank you Thank you.....

So - How We Doin?

"How We Doin?" as they say in Vermont. Busy. Very Busy. Good busy. Crazy busy. But busy. Today we have Nutritionist/Gastroenterologist at 10 for Baby Dee. Cal has Allergy testing also at 10 (Thank goodness the Other Mother has a very flexible work schedule) Bobby has a psychiatrist appt at 1:00 and his first visit with his new therapist at 2 pm and need to be back home for AK getting off the bus at 3 and then both Bobby and Cal have basketball practice at 6 and a game at 7. Phew.

Through all this I am grateful that baby Dee is thriving, gaining weight (8 pounds 3 ounces at 4 1/2 months...) and stealing our hearts more and more each day she is with us. I also have the pleasure of having bio-Mom attend everyone of her outside appointments (bio-Mom does NOT come to my home for baby Dee's physical therapy and early intervention and visiting nurse appointments - THANK GOD for some boundaries...) You know Bio- Mom has her own cognitive challenges (nice speak for she tests/presents as mentally retarded- nice and all, but mentally retarded) and I can't help but feel for her and want to support her in her parenting because she really LOVES her baby- but FOR CRYING OUT LOUD...this woman is hard pressed to take care of "normal" kids (her first she gave up for adoption, her second is being raised by a paternal grandmother, her third she gave to bio dad and he lost the kid to foster care...and now the baby is her fourth???) How in God's Name is she going to care for a medically involved infant??? My head is just going to burst. Explode. Really.

CAl is clicking, sniffing and twitching all over the place during the day **(his therapist has suggested Tourettes. SUGGESTED???? WTF!)** and peeing on the rug and in the bathtub when woken at night to go to the bathroom because he is flailing, disoriented and SLEEPWALKING and CANNOT be woken up...FUN TIMES.

Somewhere in between the appointments and my head exploding in disbelief over the insanity, I need to call one of the Social Worker Supervisors and say WTF (What the Frig!?!). AK was on Speaker phone last night with Mom and she was talking crazy/ feeding poor AK pipe dreams...like

"Don't get mad at me because we don't really have any presents for you this Christmas, but when we are together in February we'll have a big Christmas then. **(February??? WTF)**** Now you need to know she is telling AK how much fun they are all having right this very minute at Aunty Brendas playing Wii....but they can't get him presents.....oh - and it gets better....

"You can stay with me at Aunty Sandra's where I'm staying from Dec 23 til Jan 4 so you don't have to go to Vermont for Christmas, DFS doesn't mind when I talked to them" ***(ummm Last I checked Mom is on a SHORT leash of one hour supervised visits every other week.....and the relatives have a HISTORY and are not approved or approvable to have the kids. WTF)*****

"I have surgery on Jan 5 for my lung and we'll see if they can scoop it (CANCER) out or if they'll take out my lung, but Aunty Sandra can watch you while I am at the hospital" (ummm- last I checked - AK is placed with us is because none of the relatives are CORI cleared/clearable to be near the kids - let alone supervise them....uh, and isn't having a lung removed a little bit more complicated than day-stay surgery???? Uhh..and won't AK need to be back in school by Jan 5????)

Oh - and to top it off - his step-Dad gets out of prison today (we were told he was sentenced and went to prison for 5 years this summer for beating the crap out of Mom and ongoing Domestic Violence....and AK just can't wait to see him...YEAH!

I need to get that boy a therapist PRONTO. Like yesterday. Oh - yeah, and by the way.....Merry Christtmas.

100th Post

Nothing witty, brilliant or particularly insightful about my 100th post - just a few stolen moments of quiet gratitude for the opportunity to connect with an amazing community of wise women amd men who honestly share the joys and challenges of foster and adoptive parenting Thank you. Thank you. Thank you.

Too True Tuesday

Today is Too True Tuesday - (http://theaccidentalmommy.blogspot.com/) and you know what that means...The Accidental Mommy asked : This week tell us what you are getting yourself for Christmas (or holidays in general). If you are not a holiday celebrator, go buy yourself something and tell us about that!

Well..boring as it sounds I just bought myself the most beautiful blue and white Norwegian style sweater that opens all the way down the front and has these fabulous silver buckles instead of buttons. A bit of an indulgence, yes...but it worked out.



I called The Other Mother on the cell phone from TJ MAXX to check in and told her that although I went to TJ MAXX with full intentions of finding Christmas presents for the family, all I found was the blue and white sweater and a rug for the baby's room.... (yes, you heard it here - THE BABY'S ROOM...as in, maybe she'll stay long enough to outgrow the cradle in our room and need her own crib....She certainly could use her very own storage unit with all the paraphanelia and baby things she has....but I digress

Anyhow - back to the sweater...The Other Mother, being the understanding lovable woman that she is, and knowing the challenge of shopping for me, said "Oh nice! Why don't you wrap it from me..." Ummmm. LOVE that woman!!!

Guess Who's Coming To Dinner?

Last night two brothers we had in foster care the spring and summer of 2008 came to our house for dinner with their Mom and two sisters. The boys, with their Mom's permission, were the ring bearers at our wedding in 2008. Bobby walked us down the front porch into the front yard where we were married by a Justice of the Peace. Our neighbor's six year old twins played the cello and violin. It was beautiful.

Anyhow, for the past year and a half, since the boys have left and returned home, we remain in contact pretty regularly. They are no longer a case in the foster care system - thus the pictures. Sometimes Mom calls, sometimes it is one of the boys. They call us when things are going well and when thing are going not so well. What I treasure the most is that their Mom respects and supports their relationship with us. It was so nice to sit and hang out (well, as much as you can hang out with eight kids...) and just enjoy each others company.

We watched a very gross, I mean cool, DVD photo slide show of the older boy's recent accident. He got his finger caught in the chain of his bike and it ripped off the tip of his finger up to the knuckle..so the photos were at the ER and retracing his steps (blood on the door to the local convenience store where he called home, bloody curb...) EWWWWW gross...but he was so proud. Maybe he'll grow up and direct horror movies????

Mom gave us this really cool snow globe that you can put pictures in. On one side was the two boys and on the other side was the two girls...She also gave us two copies of their family portrait. Although their pictures are all overthe house, it is from our time together in 2008. It was so nice of her to think of us and know we want more currrent pics of the kids - they are so stinking cute!

Apologies From My Inner Control Freak

I may have offended some or perplexed others when I said we could handle a diagnosis of Cornelia de Lange Syndrome but were certian we couldn't handle Fetal Alcohol Syndrome. Let me explain. Bio-Mom is in a drug and alcohol rehab program and has her own cognitive challenges. If the baby's disability is a direct result of her Mom's drinking/drugging (FAS) I would have such a hard time supporting the Bio-Mom and the current plan for reunification...I would feel this resentment/blame/anger. The baby having a genetic disorder, a mutation of her genes, feels different to me. I feel like I can better support the Bio-Mom's role in parenting and reunifying with her ...child, if she is able, A diagnosis of CdLS is a new framework for explaining the baby's multiple hospitalizations for Failure To Thrive. Failure to Thrive, on the other hand, refelcts poorly on Bio-Mom's ability to care for/maintain the child.

The other issue is the broad spectrum /range of issues from FAS..some of which don't rear their ugly little heads until later. It is the Big Unknown which scares me, With Cornelai de Lange there are indeed some awful things to deal with: heart defects, gastro-intestinal issues, mobility, communication disorders.....but for the most part, there is a protocal, a treatment plan, a series of steps or tests, modifications, or surgeries to deal with each issue.

Also, I think it is just how I am wired: my inner (OK - not so inner) Control Freak has a hard time with a disorder that doesn't play by the predictable rules.

The Genetics Dr. said although the baby is diagnosed with CdLS, it is possible (given Mom's History) that she could have FAS as a a secondary issue...We will just have to wait and see when she gets to the preschool stage to see how some of these issues develop. YIKES

CdLS

On Tuesday, Baby Dee saw the Gentics Doctor and was diagnosed with CDLS...We have been digesting this diagnostic possibility and ruminating on all the possible scenarios for quite some time. We have had several weeks to wrap our heads around what it means knowing the baby has CdLS. We have a very astute friend who, upon meeting Baby Dee on day two of her placement with us, enthusiastically says "So has she gotten her diagnosis yet?" And when I looked at her with a puzzled expression, she smiled even wider, nodded her head and said. "Well...Cornelia De Lange Syndrome: like my Jennie (daughter)".

So, what is CdLS? According to the CdLS Foundation, CdLS is a congenital syndrome, meaning it is present from birth. Most of the signs and symptoms may be recognized at birth or shortly thereafter. A child need not demonstrate each and every sign or symptom for the diagnosis to be made.

As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birthweight (often under five pounds), slow growth and small stature, and small head size (microcephaly). Typical facial features include thin eyebrows which frequently meet at midline (synophrys), long eyelashes, short upturned nose and thin, downturned lips.

Other frequent findings include excessive body hair (hirsutism), small hands and feet, partial joining of the second and third toes, incurved fifth fingers, gastroesophageal reflux, seizures, heart defects, cleft palate, bowel abnormalities, feeding difficulties, and developmental delay. Limb differences, including missing limbs or portions of limbs, usually fingers, hands or forearms, are also found in some individuals.

The GREAT NEWS is she does not have all the issues listed above...She is actually quite a cute little baby and has an infectious smile and lopsided grin. To most of our readers, CdLS probaby sounds daunting. But can you believe we were HOPING this was the issue and PRAYING it wasn't Fetal Alcohol Syndrome...??? CdLS I we can manage - but FAS we CANNOT handle.