my nine lives: May 2010

Sunday, May 16, 2010

Let's talk respite care

Have you ever taken in a child for respite care? Or, sent your child to another family for respite care?

Did you know that respite care is an option if you have a child that is having a difficult time and it is disrupting the family and everyone needs a break??

I have learned that many people do not know about respite care. It can be a great resource during a difficult time. Personally we have had children come stay with us for respite care and we have sent one of our children to another family for respite care.

I have read blog, emails, yahoo groups, etc. about children being disrupted for various reasons. I wonder sometimes if the family got help before hand?? Did they know anything about respite care?? Would they have decided to disrupt if they had a chance to have a break from the child, a respite.

Respite care can be a way for a family to have time to reflect, pray, consider their options and decide what the best plan for the whole family would be.

It can be however long or short the family needs. Sometimes a weekend would be helpful and sometimes it may take months. It can be with a relative, trusted friend or willing family across the country.

Sometimes families reunite and live happily ever after, sometimes the families reunite and realize that it is not going to work, sometimes the family will decide during respite that it is not appropriate for the child to return at all. The respite family will often times adopt the child or help find an experienced family to adopt the child.

In our case, our child came home and things are good. The respite time gave us a chance to look at our family, the issues and make a plan for our family to reunite and help our child work through their issues. I am thankful that we were able to utilize this resource for our child and our family.

Feel free to contact me if you need respite care for a child. I know of several GREAT families that are willing to help!! Respite care might save your family!!!

Friday we are getting a young man for the summer and my kids are EXCITED!!!!

Love,

Friday, May 14, 2010

My Girls....

I wanted to share a little about my girls....I usually give little snippets, but not the whole story when it comes to my kids. I thought I'd share a little more here since I have been asked quite a few times lately and receiving more emails with questions about them. I'll start with our oldest daughter....

Marissa Anne

She is in her early 2o's (and funny about her age) living on her own. She is a paramedic and a student. She is contemplating going to Fire Fighting school, but is currently on a volunteer department, where she started when she was just 17! She is also the first female to serve on their board!!! Go Rissa!!! She lives about 5 hours away, but I still go and see her about 1 time a month!! I think she is just GOREGOUS!!

Emilea Victoria

She is finishing up her sophomore year in high school. She just got her drivers license a couple of weeks ago and has been running errands daily!! She is in the school band, on the Honor Roll and a Latin student! She really enjoys Latin, so we are taking a trip together next March to Italy & Greece!! Emilea traveled with me to China in 2007 to bring Rubea home. She is such a blessing to us and her siblings. We think she is BEAUTIFUL!!!

Kaylea Lynn

Kaylea is our Thai Princess and came to us in 2006 at the age of 5.5 years. We knew when we accpeted her referral that she had Arthrogryposis Multiplex Congenita(AMC), Scoliosis and bilateral club foot (partially repaired). The AMC and scoliosis have caused her to need many surgeries and procedures in the past 4 years. Since coming home she has been diagnosed with RAD, attachment issues, failure to thrive, eating disorder, feeding disorder, asthma, celiac disease, hiatal hernia, tetherd cord, reflux and malnurishment. Since coming home she has required a g-tube to help her gain weight as well as a trach placed for easier intubation for surgeries. She is by far our most medically needy child and even receives nursing services 12 hours a day. Kaylea weighed 24 lbs when we adopted her 4 years ago and was 36 inches tall. She FINALLY weighs 37 lbs and is 44.25 inches tall!!! We are thrilled that she is finally growing and thriving and her labs no longer show that she is malnourished!!! We are so thankful that our prayers are being answered and she is finally HEALTHY!!!!! Isn't she ADORABLE???

Rylea Joy

Rylea has been home the shortest amount of time, about 1.5 years, but make no mistake, she is definitely in charge around here!! Or, so she thinks!! She is our only child from Vietnam. Rylea is 5 years old now and EXACTLY (to the day) 10 months older than Rubea. She has Cerebral Palsy, more specifically Schizencephaly, that affects all 4 limbs. She also has issues with vision & speech, bilateral club foot (repaired) and has pituitary issues as well. She is unable to walk at this time, but we are not giving up on her. She does get around the house by crawling, scooting, rolling and demanding to be carried! She is definitely opinionated and LOVES attending school. She has had no attachment issues since being with us. She is so much like Ethan it is amazing! She went from her crib to her daddy and never looked back! She is certainly the *Joy* in our lives!!! We think she is just the CUTEST!!!!!

Rubea Grace

Rubea was the youngest child that we have adopted. She was just a few days shy of being 22 months when Emilea and I took her from that dark & crowded waiting room in China, October 2007. I cried the minute I saw her....thankfully my new best friend, Shelly, was there to tell me *it will be ok*. Rubea may have been 22 months old according to her birth certificate, but she was no where near that age physically, socially, emotionally or psychologically. I knew the second I spotted her in the arms of her orphanage director. She was being held like a new born baby and her cry was just as weak. Thankfully today she is a very strong, healthy, smart 4 year old!! She has Spina Bifida and will likely never walk. She also has scoliosis (and got her titanium ribs 1.5 years ago), tethered cord (repaired), club feet (repaired) and Holoprosencephaly. She has an AWESOME power wheelchair that she loves and handles beautifully. She attends school, that she also loves, and is in class with Rylea. She is now talking in sentences (they were unsure if she would ever talk), naming her ABC's and numbers, colors, shapes, animals, body parts, etc. She is very near being on target for a child who is 4. Her weaknesses for the most part are due to her physical difficulties!! We know she will face some challenges as she ages due to SB, but we are certain she will handle them all with *Grace*. She is very PRECIOUS to us!!!!!

Those are my girls!! Thanks everyone for asking about them!!

Wednesday, May 12, 2010

Look who's straight!

Kaylea recently recieved her long, long awaited titanium ribs! We are just thrilled with the outcome of her procedure! It is quite an invasive surgery and she had some major movement of her spine and ribs, but she did great in the hospital and only ended up staying a week!!! Thankfully she was only in the PICU for 4 days and then moved to *the floor* for 4 days!!

Unfortunately the hospital blocks blogger, so I was not able to blog during our time there, but now the we are home and she is settled, I have more time to share her experience and her

x-rays and pictures.

This is the side view. You can see the large hump on her right side is now MUCH smaller!! Isn't it just amazing??

In this view you can see how much they were able to straighten her spine!! We are amazed at just how straight she looks now!!

This is her spine the morning of her surgery!!

This is after the surgery and under the 3 white bandages are the incisions!! Look how nice her spine looks!! :-)

She looks sooo much taller to me and is looking more like a *9* year old young lady every day!! John just measured her and she is 2.25 inches taller!!!! WOW!!! She had to wait 3+ years to finally get her ribs due to her weight being so low. I blogged about her eating issues a while back. She is doing better, but still uses purging as a control tactic. We are scheduled to have her evaluated at yet another hospital in Dallas next month!! Our G.I. doc on base finally decided that she needs some outside help, but of course had to the top dog at the base hospital to get approval. However, he was able to accomplish that in a matter of a few days, so he has earned back some of my trust!! IF, she is admitted to the program it will be 6-8 MONTHS before she gets in. However, they have a great reputation and their program is in-patient, so I feel like it will be worth the wait.

See how great she looks!!!!

I have asked about having her trach removed, but none of her docs feel that it is a good time to do that procedure. Suddenly, everyone feels that this was a good option for her, but I'm not feeling it! We continue to have nursing services 12 hours a day, and I am finally getting use to having someone here all the time! The g-tube....well, that will be in for quite a while. At least until she successfully completes the eating/feeding disorders program! That is the scoop on Kaylea!!