Wednesday, April 28, 2010


Very quick update

I do not have a good computer to keep up with the blog so please understand I am fine, we are all fine...so much to tell you

The boy from Haiti arrived last night, he and his mom took a bubble bath (not together) LOL and are off to the airport to Cleveland for their final destination for surgery. YEAH


The local family (Simon's) who went to adopt 3 orphans are in the air (I pray) and on their way home from Ukraine with their 3 new angels (3 toddlers with Down syndrome)they have adopted officially in the Ukraine and coming to Cape Coral.... Kaitlyn can not wait for summer to be her mommy's helper. Their blog shows all the love and smiles of a truly happy family.

Jordan's birthday went smooth, the house is back to normal as normal can be... I have my parents coming this weekend to see them off to their summer destination (Illinois)

Emma is crawling which gives me a new level of keeping small items off the floor (Tress and her beads)

A few mishaps I can fill in when I can...

Out Speech therapist did a wonderful job on her all night walk for breast cancer this past week, GO JILL!

If I forgot something I am so sorry..I have put some picks on face book via my phone. The little girl is a friends child I was "babysitting" while her mom shopped for a new water bed... lol BREATH!

Gotta run delivering bread to schools, books to hospitals and fliers to fetal medicine offices. Need a shower and home by 2.

Friday, April 23, 2010

Balancing the blog time into my daily schedule right now is more than I can handle some days and here is why: The laptop I have is used and old...It takes approx. 27 minutes to load to the on / running mode and then to click on (sign in) to the blog ad a post position is another 20 minutes so by the time I get to this point I am pretty wiped out..sound crazy?? I am a fast paced person and do not want to waste so much time getting on to a computer... so by now I loose interest in even posting.

Let me take you back to Monday the 19th, I get up and dress for a 9:30 am Doctors appointment for Emma to get her 1 yr shots.. It felt good to get my hair ironed and go out. I get to the Doctors office, Emma all dolled up cute and the waiting room is full. I sit after signing in. A few minutes later the office staff poke their head out the window and say "Hello Mary, are you here to visit?" "you are a week early, but while you are here you can pick up the kids summer camp physicals" Gosh darn, a week early. Yes, Emma gets her baby shots Monday April 26th at 9:30 am. Emma and I go to the local Walmart to pick up a few things then home for the day.

Tuesday the 20th I am up to take Tressa to her Doctors appointment to discuss her bladder reflux, it is all good. A class 1 and no need for surgery. She is going on more antibiotics. She should out grow this in time. We will come back in 3 months for a re-check. I got a catalog to purchase a bed time alarm for bed wetting. The process is going to wear me down so we will do it the months of summer. He said 6 weeks then stop. Either it will work or it won't so do not wear myself out if it isn't working after 6 weeks. Once through the Doctors Tressa and I went to Burlington Coat Factory to put a lay a way on for Jordan's Birthday. He wants a new suit. It takes me a long time to go through all their suits to locate the right one in a 16 HUSKY that is not over kill for a 2nd grader. We find a nice black pin stripe simple cut; I get three shirts, two have ties that clip so I get a shinny black tie tie. I locate two outfits for hot days, shorts and tops and a watch because he has been wanting a watch for some time now. We get home in time to find the house being completely re-arranged. We talked about changing rooms because the kids are in the TV room where I can not see them 90% of the time. My daughter believes it would be better if the TV room was the front room and we let go of the formal living room. The TV room as it was did not have air conditioning so would get hot during the summer, now it is the therapy room' fans will work for morning therapy and late in the day therapy so I guess this is best.. It feels odd, I feel like I do not have space/time for me. We will see, she said 2 weeks before we sell the living room couches and see if this works. In order to have it this way my good quality piece of fur nature; I love Burro, is now stick in my bedroom as is my curio cabinet full of Disney collection. My room is wall to wall wood cabinets/dressers which no one will see.. It also makes me feel over taken in my room, I know it is to make summer easier for the kids being home all day.. I am thinking positive. I can not store anything outside it will get ruined so that is not an option. The day ended with Miss Jill coming and saying she liked it better this way (house) now she has a table in a room with lighting and space outside the girls crowded bedroom to perform therapy. So yes it is best for the kids.. Mandie says it now looks like a house with 7 kids, I think that is my problem, I always always had a home that from the front door didn't appear to be trashed by kids...LOL OK, well no one fell over anything. The toys, games etc were in the other rooms away from the front door. My issue I guess. The bread run this week was a gift, I got the items loaded and enough cupcakes for Jordan's class for his birthday Monday. I put them in the freezer for fresh keeping I am short $$ this week again making up from the funds used for spring break "vacation" juggling fiances and making sure the kids get everything is a balance act like none other.

Wed, still not dealing well with the change of the House. I know it has kinks to work out and we have not gotten everything out of the garage yet so the inside isn't in order yet to make it flow again in the new flow pattern. One day at a time. Emma seems to be having s time with allergies today, watery eyes, nose running and a cough coming on. I am doing another bread run tonight to introduce a new worker to help until the end of school. Jordan's 1:1 will be picking up for me on Wed nights so she can take the bread to go home with the children in the back pack program. Children less fortunate will get a loaf of bread on top of their weekly food provided for their weekends going home in their backpack on Fridays. Trish and I talked about the center in Cape Coral we are trying to get off the ground with the help of another family new to the area. If it appears to take off we will announce, all is in the planning right now to see if it can be a go. Miss Joll comes and then Ms Jan shows up from her time away for her father's death. The house is getting busy sinceKeirsten had a pack of children (teens) show up that are questionable at best. As i watch through the window a large male reaches over to grab her breast, I fly out the door and they scat...the kids high five (with nuckles) and laugh as they part. I am not pleased. Tomorrow we are to meet Keirsten's new boy interest and if this is any display of what to expect it will be a short live visit. Keirsten seems clueless the boys actions were a violation of personal space and body privacy!!! so this is another subject to cover in theray.... YIKES!!!

Thursday April 22 I am up to a lunch meeting with another adoptive parent to start a support group for adoptive parents in Ft Myers. We meet at Bar Louie's in the Mall for a bowl of soup and business. All went well, we have a location, with child care and a once a month meeting with quarterly social events are in the works. I am home to prepare for Kaitlyn's band concert ... Keirsten is having over this by she wants to date but knows it is a no go until I meet him... He is washing his dog???? The message is clear, he needs to be here and go home before 6pm because I am leaving and Mandie is not dealing with this .. It is almost 5 and he is starting to walk??? I reafirm 6 pm he leaves..yes yes... He shows up and Keirsten is all giggles and blushing. He is much to my surprise a very nice boy with lots of entegrity. He does not know any of the kids that came over last night (THANK GOODNESS) and he is in IV classes at Cape High, does his homework and seems to be a very positive person for Keirsten. I was a little taken back that Keirsten had not told him of her siblings, imagine the shock of that???? Not only does she have 11 siblings but 5 have Down syndrome and although Tressa's Prader-willi syndrome is not physically visable it manifests itself in time with the OCD and she was all OCD while he was here...LOL She wanted hom to be her friend, tie her shoes and check out her posters in her room, etc... Lucas was spittin and sputtering trying to sit on his lap (we did help out there to get some tension off) It was killer funny when the house was dead silent and tressa looks at him serous as can be ans says "Happy earth Day Bobby" LOL Mandie and I the go over ALL THE RULES, making sure he knows that Keirsten has set rules for phone time, curfews, make up, yada yada yada...Then out of the blue Mandie says "so lets talk about puberty" LOL the poor boy about flew off the couch. Mandie informed him that keirstn is a virgin, will remain a virgin and she is married to a very big Mexican that will be one angry big Mean Mexican isf that were to change in the slightest.... He took her serous. Then she says "so do you have any questions about puberty or sex tat need discussed?" You can ask me anything, I am all about making sure we are all on the same page. I can not remember if this is when he asked to use our phone or not, he called his mom to check in...LOL his cell phone is dead he explained to her. OK, here it is. I showed up at 6:30 to drop Kaitlyn off and not one car was there. I called home to have Mandie read the paper and she informed me it says :45 to drop Kailtyn off so I am 15 minutes early... We have friends meeting us at 7:30 for the concert... But still no cars . One more check and IT IS IN MAY,,,,,,I AM A MONTH EARLY!!!! kailtyn is not taking my blunder well, Mom we can't go home --no mom my band concert!!! No do not go home mom, go back to Mariner Middle now!! OMG how do I get through to her I screwed up!! I tell her I need to stop at Target to get shower curtain hooks. The night is not going well, she is not taking this well. We get the hooks and go home, Mandie is aware of what I am dealing with so she has a band concert set up at the house. Kaitlyn enters to be the star performer (which Jordan was not happy about) LOL and she plays the make shift kitchen supplied drum concert for her brothers and sisters.

Sunday, April 18, 2010

A week ago today I was well rested

So the past week I went into over drive and feel like things are going to rocket from here... let me catch you up the best I can.

Ali (dog) is no longer able to nose dive into the fence and pop off planks to get to the dog behind us so she has started chewing her way through the PVC --YIKES... I think it might be time to discuss getting her fixed??? she is 9 months old and Rosco behind us seems to be the goal for getting the fence down. The only problem is ROSCO is the size od Ali's paw!! LOL

Emma is crawling and I have not purchased a toddler corral so I am up and about every 3 second as she has discovered EVERYTHING she is not aloud to touch and the game is on to who has the bigger power...Emma or mom. She is doing fantastic. Moving to Whole milk this week and table food through the processor since she has two very small teeth

Lucas is gaining more and more every month His OT and speech are my team here at home and the school is so supportive (this year) Not sure but looking to home school at this point for next year since the school system calls his placement life skills and I am 100% apposed to it.

Tressa is struggling this week and the lock down has been mute at points. She has the skills like none other and one slip up she is on it.. Her tummy is rounder so I know and her weight up a few lbs so she knows...fish and veggies until we are back to 97lbs. She is doing so much better in school this year and I am excited about her having the same teacher next year for how much progress that will bring. Her aide is working on eating like a "LADY"

Jordan is amazing. He has come so far I can not begin to say how impressed I am at his team. I really think he will sore with my new project.....

Steven, he has made major social skill leaps this year, has become a vocal teenager and as much as it annoys me it thrills me.... HE IS TELLING PEOPLE HOW HE FEELS.

Kaitlyn as always is exceptional. She is full out teenager and one day I can love her to pieces and the next wonder why God put teen attitude into our parent years... couldn't that be something in the senior years...LOL She heard "You are ruining my life" and has no idea the meaning behind that sentence but says it to me when i say no to something as simple as not having a piece of cake.... because she already had one..LOL
Keirsten is the one I am worried about today. She has taken a turn for the worse since having contact with her birth family over Spring break. She is spiralling and we got her into therapy so she can work through the anger but the time it takes which is natural is also heart wrenching. So many self destructive behaviors and I have to stay at the top of my game. Thank goodness she is not my first time at this.

The outside world and me............

I feel we are on the brink of getting some hearts fixed, we have contact with Haiti and three children appear to be getting processed to come for heart repairs. Since then I have a bone guy on board.This is so rewarding for me. One Doctor here in town is stepping up to help a boy who needs his two feet amputated. Sad but this will get him of the ground and walking for the first time in 8 years of his life...I am going to Cherish that journey. We have a couple more Haitian children in need of orthopedic coming too. I will host one or more of the children so we are rearranging our home to accommodate the short term addition.

Now for a dream to come true.. We possibly have a building to offer on site support in Cape Coral through SW FL PODS Angels... as soon as I have it confirmed I will make the formal announcement and share all my dreams and desired donated items needed. It will be a more social group which in turn offers respite to families and skills to their children.

I need coffee...

Sunday, April 11, 2010

A real vacation

I call it a real vacation because I actually came back rested, calm with having a vacation with the children and myself solo meeting another family from Orlando and local families drop in. Very nice!!

We left our home for the 15 minute journey to the causeway to Sanibel. LOL Yes we went far...maybe that is the trick...
Checked in Wed., played at the hotel from noon until dust. The pool is big and kept nice. They had HAPPY HOUR next to the pool. One salty drink and I was done. The kids enjoy hotel life. Have been called hotel junkies any times. Now I am accused of spawning Emma into the role...LOL I can find deals and if there is funding to be found we are on it. The Proud go hungry, so I hear. We do not take anything not rightfully entitled to but do seek for all that is. My goal is to raise my children to be self sufficient which requires coupon clipping, sale racks, seeking funding for whatever you are entitled to.

Thursday was the day at the Islands.. We had a blinder in the morning when the service providers child was sick and things went array... only for a split second. They made a quarantine area back at my house, got the kids from the hotel that were not going ot the Islands and I drove them home for the day...see it paid to vacation close. I ran them home with only Keirsten and Tressa in to.. Five Girls on two Islands in one day... What a nice time we all had. Lunch was an experience. You would think good seafood would be asy to find on an island.. well it wasn't the case for this lunch. Parking lots for public beach access were backed up so taking it out to the tip of Capitiva paid off and we were set with parking, potty and no crowds on the beach. We did some shopping and headed back at dusk for some dinner before going for the children at the house. I scored on free coloring books at the welcome center for our upcoming conference. Found a pear to pear like our banana and apple games which were the same $ as in town so that was a score. Picked up ice cream treats at the grocery store which neither Keirsten, Tressa or Chloe thought anything of. love it when the kids cooperate.
Friday was "predicted by weather forecaster" to be storms throughout the day so we had a tote of crafts planned. in contrary the day was full of sun. The kids were in the pool literally the entire day. I helped Chloe put her treasure sea items (shells,sand) into a container and decorated with ribbons and more shells to complete a paper weight for her Daddy who couldn't make the trip and was working. Sue and Taylor came to play enough time to BURN and my children even with Sunblock 60 are pink RED. Katie keeps the title of burn queen... her little face is a mess and aloe is close by. Once home real aloe from our plans are soothing her.

Saturday came too fast, a morning of breakfast and swimming brought on noon check out before we knew it. The parting was sweet, we will be together again in June and again in July.

Sunday (today) laundry in mounds only if you were here you can imagine. YIKES! School tomorrow and they do not want to go... I need them to go so I can catch up on things here.

My mind wonders back to a conversation we had at the hotel. A family locally living in San Carlos states they are in the final selection of Extreme Makeover Home Edition for the South Build and that they got a call saying it will be about a year before the build happens...???? not sure why we didn't get a call saying that. I would think if this information was true we would have gotten a call because living waiting on the hope... it seems we would have gotten a call too??? I must not let this create discouraging thoughts...

On the work side of life.

We have two more baby's in need of help from Haiti in the Medical Advocacy world.. Haiti adoptions have opened back up and I pray a baby with Down syndrome is referred to for the heart surgery I secured for a child to have. Nothing more disheartening than putting so much time into securing something that isn't followed through. The little boy with fee issues is on his journey. The process is moving forward. I am not sure if we will host him, some shifting since the two girls from Haiti have come up.

The PODS things are falling into place for a conference May 8th. Many Fed Ex boxes of hand outs and information to pass along. I have three speakers set to speak..Just getting families to the event now. A flyer is next and on tomorrows to do list.

I am working on other facebook pages to help load information to the Oklahoma site and Florida PWS site, uploading valuable information and letting families know how they can change some things in the system with little effort. LIKE, Nancy my friend living in Ft Lauderdale and I have requested SP&P guides (Bible for ESE students) each year and now it is like pulling teeth to get. Nancy called over and over requesting the guides be put in a DOE website with a drop down bar for each district GUESS WHAT... we got it! A click of your finger and you have the information today! GO NANCY.

Lots of things coming up I pray all those with disabilities are aware of. Family CAFE in June, National NDSC conference in July (Orlando) etc.

Now the new decision..can I and should I go back to work in a real accountable job? Everything I do today is volunteer and a job opening I am well suited for is open locally..... I will loose some of the kids funding and supports, I need to check exactly how much but any might hinder the decision for medical... I am pondering...

The local family adopting in the Ukraine the three little ones with Down syndrome have departed on their journey..... pray for an easy transition from the Ukraine to the USA for this family. they have big life changes and need lifted by all as it will be this village they seek support in their forever journey.

Wednesday, April 7, 2010

Friends and Family





We are off, I will post photos later....

Checking into local hotel out at the beach (Sanibel) to play with out of town friends. I will post photos later...I have to come back to feed Ali while photos load. :o)

The kids are excited. off we go...................

Tuesday, April 6, 2010

What a packed day

We did so much today from finishing the food shopping, preparing three days of meals, fixing the pool AGAIN yes she shewed another extension cord so we now have the outlet boxed the cord under a plastic runner and the motor cased inside a basket. I think, I hope we have out wit her. I buy her good meat bones..CHEW THE BONES GIRL! Keirsten needed a new bathing suit and I found the answer to my sons failure to remember how to spell his full name J O R D A N wear... Yes, shirts that have block letters spelling his name. Now I need to fin a hat, socks LOL Nike has no idea how much this will help.

I am beat, we did the bread run and only one delivery in the morning since school is out. Noon we check into the hotel pool and have lunch.

SEEKING NEW CAREGIVER FOR JORDAN

Yah, that is what I thought, no takers....LOL I am just kidding.

I got the EEG scheduling appointment. I need to keep him up until midnight...let him sleep until 4 am and keep him awake from 4 am until his 10 am appointment. YEAH! this is going to be my single most stressful day EVER....and it is 3 weeks away. I really think all these "rule out" tests are a real test of how much I am capable of...how strong of a woman an I really...lol Well this is one tough mamaa'.


I have had a busy couple of days cleaning up from Easter/putting away decorations and packing for our get-a-way. I plan to relax out there (hotel) and let it just be family time. We have all our toys, pool side clothing and everything we need to stay right there and have a great time. I am going to grill pool side one night. The kids love grilling. I have the slow cooker and contents for one night... and we have the blender with the pour spout for all the drinks we can enjoy....smoothies both under 21 usage and after bedtime over 21 usage... ;-)

Too much drama with my 16 year old this week and I followed through on my consequence for her which felt awful yet I am being told a few more times and things will get better. She pushes the limits and it bothers me that she sets herself up for heartaches but I can only guide her.. She was stating she doesn't want to live here any more, I have ruined her life etc. and the sad part of the entire drama is that Kaitlyn was right there and she doesn't understand so now when she gets frustrated she is saying "you ruined my life" "I don't want to live here anymore" I know she doesn't even know what she is saying.... it hurts that she has even experienced the words. This is where I wish we all had space because it is difficult to have personal time....grieving is part of living when you have children with disabilities they have to face as teens and being adopted has a set of grieving processes you go through ....Kirsten struggles and her birth family is here from New York. They hadn't contacted her for years and now want to call 9 to 20 times a day. They want her at the cousins birthday but didn't call her on hers, they want to have her up to their grandmas and she wants to go one minute and then the next she is angry and sets it up not to be able to go... She is at a stage of her own mental issues that she needs to use all her energy to stay on her own course and this makes it all much more difficult.

More than anything we need this get away.

Saturday, April 3, 2010

EGGS EGGS EGGS Emma is having FUN







Coloring Easter Eggs





I am not sure I have the energy to post the past three or four days. It has been extremely mentally draining.

Kaitlyn needs or at least the doctors feel she needs oral facial surgery which I am very stressed over. They will cut her entire jaw out top and bottom and widen it surgically and fix the fused soft pallet, then use mechanical apparatuses to get her bottom aw to go out further and line up with her teeth and take stress of her chin muscle...yes yes yes if all goes as planned it ill be better for her to eat, talk, chew and close her mouth. Not that she can not do all of those things now, she ill be able to do them better.

BUT WHAT IF SOMETHING GOES WRONG..........the reason I say this is part of the explanation was. Well, Mrs. Pringle the crank we placed in her mouth years ago in most all cases is flawless and does the job. In Kaitlyn's case that did not work.......................................

Keirsten went to a friends and didn't call home, missing for five hours NOT LIKE HER AT ALL and we all went searching, things got crazy. I know she is 16 but she had never done anything like that. She said she is embarrassed about our house and her siblings... we need to work on that.

Jordan is being scheduled to go see a Nero surgeon and having an EEG. SO many words way over my head about strokes that do not leave images on MRI's and are mini which can and do reoccur. He is fine..he is fine. he really is fine. This is all rule out procedures and a final ruling on the Dandy Walker.

The organization is taking off yet underfunded for what could be offered... I do not have office computers with data base to keep things flowing but all in all things with that are rolling fast in the right direction.

It is time to color some Easter Eggs and I need some mindless fun.






BUSH GARDENS TRIP





Thursday, April 1, 2010

BUSH GARDENS HERE WE COME!

I need to get away with the kids, we have Emma and Lucas in Mandie's care and we are up early to head to Tampa for a day of play! YIIIPPPEEEEEE......