Monday, April 27, 2009

So here is the run down

She gained!!!..now 6 and 1/2 lbs!! GO Emma. She isn't any taller, but head has grown. Temp perfect and exam shows no illnesses.

I need to check with Eye specialist to get in to see the Retina specialist and the Peds eye specialist to follow her because of the oxygen given after birth and the distress.

I am still working on the CMS intake.

Endocrinologist will follow her abnormal thyroid and we have labs to draw more today.

Neurologists will see her in the fall and follow her development

NICU follow Up is going to follow her and set her appointment at the adjusted age of two month being in July. Due to her born at 32 weeks, cocaine and Marijuana positive, Down syndrome ASD/VSD.

She has a herniated belly button we will wait and see until she turns two as to what that plan is.

She has a blocked tear duct also followed through the eye specialist.

Her heart specialist is in three days which will help ease my worries.

Early Steps has been out already... OT, PT and speech are to come.

A swallow review study is to be done.

We are adding cereal to the formula and after each feed holding her upright on my chest for an hour to evaluate her reflux or not.. if it doesn't improve she will see Gastric after next months appointment.

I am most likely missing some one but right now I need to feed and hold upright.... this is going to be a nice ADJUSTMENT to my schedule....LOL

Off to Emma's one month well baby!!

Early Intervention

My earlier post about my experience with Early Intervention in no way says for families not to enroll into the program. I am disgusted in the way the program delivers to families today. I am a very experienced parent from having Early intervention years ago and learning when the program gave ample supports and services to our children... Now, I find the staff running the program is funded and the client is left out in the cold (MY OPINION) and here is why.

Early Intervention is a Federally mandated Entitlement program for ALL families who have children that fit the criteria... If you are reading my blog most likely you have a child clearly with delays or know of one...if your child has Down syndrome or Prader-Willi syndrome the risk of having delays if they do not today qualifies them for having their diagnosis. So for families who qualify; Federal dollars are provided to the state and the state has matching funds to support Early Intervention which is REQUIRED by LAW to have in place to offer to families FREE OF CHARGE...This being all families regardless of income, assets, INSURANCES, etc.. So the funding is there. Then you have the billing for services. They will get you to sign for insurance to be billed..and believe me they will bill for all they can. "IF" you have insurance that covers the services and has no caps to therapy by all means I believe they should tap into any and all funding to support the program. It is the not informing that gets me fired up.... Say a new family gets into the program , signs all the forms with their head on backwards just grateful someone is there to assist them with their child who has this new label to them and all this new activity surrounding a family they are relieved someone is HELPING... but if you have a cap on therapy and they bill it all out in the first year and a half what do you do for the next several years??? The next program to enroll into is APD's Med Waiver and it is NOT an entitlement program although run similar..but important to know it is not an entitlement program and that has a five year min. wait list to get on services and you can not enroll until your child is three... So the math is... from about age two when you have no more insurance to bill, do not qualify for Medicaid and you will not get into the waiver until about eight to ten years of age or later...your child's fate for services falls completely on the lap of our school system, Folks, if you are watching the news... Our kids are on the bottom of the totem pole for budget in the school system...You are lucky to get 30 minutes of therapy some places...A MONTH!!!! So you better have a grasp on what to be doing in the home.... Hence having quality Early Intervention in the home to provide direction in the home environment so the parents and family can assist their child in growth and development in their natural setting... not rocket science.

Remember this journey is life long, the more the children get in the beginning is the best we can provide for our children because they grow on each development and for our kids it takes longer...BUT it works... Meaning more than one time I have had part of my team feel our input was fruitless, that we were wasting our time...and then the magic moment happened... the day Kaitlyn decided to read she did not read one word at a time it all came spooling out.. She had been taking it all in and all in and all in when we had no idea is she was learning anything... She had so much OT many thought too much..Well today she has better penmanship than MOST 6th graders!!! Thanks to in home Handwriting without tears two to three nights a week...and he base ball batting as her reward and all that the in home OT showed us to do with her when he was not here... Did you know Boxing is GREAT mid line crossing and PERFECT for OT for our kids...I am not a fan so much but it is Quality activities for our kids in the long run... The things we learn which make life long advancements for our kids and we can share in our groups, on blogs... etc... If you go back through my blog you will see...all the items we have in the home which is PT, OT and speech related in the home, using every day.. Wii has so much for our kids.. Not the bloody mess nasty stuff but the ones that have movement crossing the body, hand eye coordination and add the BOSU ball to have them stand on and you have hours of therapy they do not even know they are doing "therapy" The games you can get at Toys are Us...Hyper Dash!! Many therapist use this in the schools... SO as parents we just need informed.

I also believe my connection with Hope Haven Center for Down syndrome in Jacksonville has been a key. I do not feel i need to go every year for me but possibly every other year. When the kids were small I went annually and they would like for us to so they can keep a good tab on growth and development and give us fresh direction. With me having five it is a lot... This year the Orlando DS group funded our sessions and I am so grateful because I needed that shot in the arm.. I am informing you that there is so much out there. Reach out to families, support groups and everything possible... DO not lay all your eggs in one basket because you will miss out. You child will miss out.

Now that soap box is sizzled for the moment be sure you signed up for Family CAFE in June!!!

www.familycafe.net The all inclusive conference in Orlando for giving information on all the supports and services in Florida for Florida families raising children or persons who have disabilities...A must experience conference. Again, if anyone has questions please share, everyone learns when we communicate.. If it is personal email me. I will respond.

Also remember advocates!!

www.dsadvocate.com

Sunday, April 26, 2009

you need to visualize yourself...

No pool photos today as the girls are playing outside in the strong sun rays and not wanting tan lines....No, they are dressed....Mandie bought a strapless bathing suit...Keirsten found an old tube top I believe is from the bra section and some not so much fabric panties to match.....well the next thing I see is Tressa exiting with an adult bathing suit which has a deep v scoop to show cleavage although on Tressa I saw a belly button..... The V was full body...then the sides are big gold metal rings which are about the same size as her thigh....needless to say some extra material at spots.... BUT..... she told me it is so she doesn't have tan lines....LOL..... I couldn't stop giggling to get her out to the pool... Oh my goodness she is so funny!!!

working on wedding details




I have several asking about where to stay for the upcoming June wedding of Mandie and Lauriano's

The wedding/reception is Downtown Ft Myers, river district which is classy shops, fine dine, bars with unique themes. It is only a block from where the event is being held. The details for this hotel are in the attached link.

http://www.ichotelsgroup.com/h/d/in/1/en/hotel/fmymb/at-a-glance


Ft Myers Beach has several great places to stay although about a 30 to 40 minute drive to the event. If you are here for a few days this will give you great beach experience. I can help with location if you want quiet or within walking to the time square...PARTY.

Sanibel is a very laid back area with shelling as their focus beach activity. It is prestige and has equal to that places to eat and dance, comedy...

Casa Loma Motel is in Cape Coral and has mini suites very reasonable. This is only a couple blocks from my home. A 20 minute ride to the event.. My kids will be with the wedding party at the chosen hotels to get ready for the wedding. I will have the two little ones with me getting ready. Erin and Lara will be here with me as well. Most of my getting ready will be completed and I will be at the reception when it opens to greet guests.

If you have any spacific questions feel free to email me. My parents have housing in their neighborhood reserved although they are 2 hours away... If you wish to fly in for a vacation and want time with them please feel free..we have space.

Saturday, April 25, 2009

Tressa's workout



Lucas is trying to see his hair cut......without a mirror


Cookie makers for tomorrows family day




I am back in the saddle of Early Intervention and not pleased with the information coming out. The initial phone call to have someone in my home was quick which was a nice response. I then got a call from the Nurse stating because Emma has a VSD and ASD she would be doing the intake for medically fragile. She came out and explained the program, giving me all the literature about rights, responsibility and program ways. It was all clean rehearsed and PRE-WRITTEN, my choices pre-chosen. I am VERY AWARE of early intervention; the most critical part for families who have never had to deal with children and insurance was completely ignored. When it came to signing for the agency to bill insurance for their services she never informed me that I needed to check with my insurance company for caps on services. That it is an ENTITLEMENT PROGRAM for ALL FAMILIES and that I might use up my allowed therapy in the first year of life and not have enough to carry my child through until she could get on to waiver services. Actually the boxes stating I wanted them to bill were pre-checked and she didn't mention anything other. This concerns me for "new" to this system families. I then listened to her complete explanation of the program...Nothing any of their staff can say to me is anything I do not know. I do not need their services other than therapies and if THEY are planning on making decisions for MY CHILD when I know way more about raising children with Down syndrome than they do, would their suggestions near the same as mine.... It has been my experience their decisions are backed by financial decisions and not what is best for my child's growth and development. This all proven by the condition of children entering school today whom have not been provided early intervention as they had in the past. Some kids not ever getting actual OT therapy until reaching school at three years of age and way behind instead of a little behind. I will not play this game. I know how to get OT, PT and speech and I know that getting services provided in the home is best. This offers us to use our home environment as OT all the time between when the OT person is here. That the older children will see how to position her in the swing, how to have her arms when she is doing tummy time on the wedge... that as much tummy time as possible is BEST..Our home is not the "usual" home so we do have therapy equipment many homes do not start out with, but can get.

My other comparison is that a family called me a week ago that has been through Early intervention process recently and now trying to figure out how to transport their one child to therapy all week so many miles away with another active toddler in tow and the economy in the shape it is for gas and toll expenses. When I brought this up to the nurse she assured me the family must have requested they get out of the home services because Early Steps is in home based priority, unless the family opts to have it in a center. SO my next question was how many OT, PT and speech people do they have to provide to the tri-county area which is actually many more than three counties and LOTS of baby's. The answer..ONE (1) UNO!!! of each. So this might mean a visit 1/4ly or once a month depending on what the TEAM decides. TEAM...the new parents has their head ten feet into grief, disparate and confusion trying to look up each new word said to them, surfing the Internet for some kind of sense in their life...... and then we have the Early intervention staff who have funding issues which are boldly posted all over that they have had funding cuts...so who is the first to loose...THE KIDS.. the client....the intended purpose for the funding in the first place. Don't send me a nurse..Don't send me people who have no idea what APD (Agency for persons with Disabilities) which is the next level of support when my child turns three...The employee sent to my home did not know and asked me what it was... I am sure she couldn't recite it to the next family because the interest wasn't there when I explained it although the family should 100% be informed about APD prior to their child turning three. Ok, you get the point..I was not happy with the services. I have no need to be in the program. I know more than they can offer to my child. Why would I want people less informed than I deciding on how much support and service my child should get when I already know they do not have adequate employees to provide adequate service.. A no brainier.

So that was my Friday....

Today I have a little break. Michelle picked up Emma for an over night and I am blogging...LOL and doing 20 loads of laundry after a long nap while the TV was on the Hallmark channel.. life is good.

Tomorrow is a family day which all the children will be together for spaghetti dinner and bid a farewell to Kory who is moving to Illinois. It is Jordan's birthday actually but we are celebrating next weekend for his party. It was too much on my plate this week and he really wants a pirates party. It will be just fine next weekend. a small cake and celebration tomorrow with the big ship coming in next week.

Friday, April 24, 2009





OMGosh it is FRIDAY!!

In another life mode.... newborn heaven

Monday, April 20, 2009

Sunday, April 19, 2009

Mandie comes today, I hope to get out and get the camera card put onto a CD so I can post some photos.

Emma is growing like a weed! We had a weigh in Friday and it was 5 lbs 14 oz 18 and 1/2 inches long. Everyone loves on her with comments about her tiny size. I am getting offers for "Do you need anything" One man asked if I needed a stroller. I have everything from the two grand sons the past two years. All of it is blue...but in great condition so I guess her favorite color is blue.. Steven's teacher brought over a girly girl blanket and bed ensemble for her to see girl colors..and the para for Tressa went all out and got outfits which are girly girl. We are a PJ kinda group here so she is warm. Michelle got three preemie outfits while we were in the hospital and she is just starting to fill those out. The newborn items she swims in. Jordan is getting into the baby now. He likes to hold her but a little too tight. He has carried her 2 times so that had to be nipped and he responded appropriately. Lucas continues to be unfazed actually oblivious to any new baby. He has his time and loves to make us all laugh out load so he is all good. Tressa is playing a lot more with her baby dolls which is a mix of Emma and the fact Lara is of baby doll age and engages her into the play. This often starts a spat on the one "favorite baby" Yes, for whatever reason, baby sister is hanging on by threads and is Tressa's prized baby doll as if it were real. She has much newer and much nicer dolls but baby sister is always the prime choice when a choice is to be made. Steven is happy the pool is warm enough for swimming, is doing a fantastic job with his regular chores now. He can take the garbage out and is coming straight back in. He needs to be supervised but no interventions are being made. It is when he knows he is not supervised he tends to push the limits and take off. Keirsten is the typical teen...sleeps till noon, thinks she should do nothing yet claims she does everything and has a phone attached to her ear if not on the computer with her ipod buds in her ears.

Saturday, April 18, 2009

While I have a moment where the house is quiet, Emma is asleep- fed and dry. I just made some fresh cookies the kids and I started this evening before bed and I think the washer is going, dishwasher scrubbing... All is good.


Erin and Lara are out for an overnight at a friends...Josh is still at Michelle's. I have my home to myself.......and seven sleeping children..LOL Yet, I feel alone. A moment of peace.

Erin has been a big help I must say. Whenever one has house guests just the fact you make room for more changes the dynamics of each day. My grand daughter who is five is a bigger adjustment for me. She TALKS and talks and talks and did I mention she can talk! LOL It is a HUGE difference raising a "only child" and have many children. If I have learned one thing for sure....I am a mom of many for all the right reasons. I am enjoying the time with Erin to get our relationship from the past to a present level of trust, mature adult level. Lara has had the crash course on disabilities and for the most part all goes well..some classic socially acceptable language is working itself out.. The words used in generations past to how to include and accept persons with disabilities in the year 2009..a teaching moment.

Josh on the other hand seems to trigger some unresolved inner issues in me that I need resolved. I have a hard time communicating with him still. I have less tolerance, less ability to make the effort..I am working on some answers.. He is almost 21, very immature in his thoughts and conversations... I hope that knowing I am part of this will help me gain patience to work on resolving it..

The kids here at home have been WONDERFUL.. because we had spring break right at the time we took custody of Emma we made major sacrifices for self desires so that Emma has had her needs met. The kids love on her so much.

The past couple days have been blasted with mishaps... Erin drove my van to take Lara to a specialist to look at her foot and some how ran over - into- who knows a stop sign.. it instantly popped a tire and did something to the windows of the van. I handled it well I believe. It all took several hours to get fixed and home, Erin took charge of getting it repaired and back in the driveway.

Josh put the SD card into my camera upside down, when trying to pull it out with tweezers he scratched the contact and so no pictures will transfer into the computer to load for all of you...ugh! I will pray they load onto a CD at Walgreen's. I can view them on the camera.

I actually wanted to get on and tell you all about the funny things that have been happening...

The last I wrote I was going to All Children's in St Pete. Tressa had her sleep study. She slept through the night with only some arrousals. Then we stayed for naps throughout the day.. We wake at 7 am then down for a nap at 8:30 for 20 minutes. She actually falls asleep and gets into dream mode. We do this every two hours and each time she sleeps. The 4pm room check to go down at 4:30 brought on a sassy girl with a major melt down. She actually fell aslppe within seconds of llights out and went into a very deep sleep (per machine monitoring her) She was hard to wake. We left shortly after for home. Once she got her "dinner" which she was a billboard reader informing me of each eattery along the highway ...we stopped for a bite and she fell asleep for the remainder of the 2 hour ride home...to go to sleep two hours later for the night.

At the hospital she was very takative, she let everyone know of her new baby sister. Most were a little shocked to hear i had a three week old and was there for a sleep study with Tressa. The beauty of it was I got lots of sleep as well.

Wednesday, April 15, 2009

I promise to catch up with everyone next week. The kids are back to school although this morning I had a re-check at 7:45 for Tressa's eyes and off to St Pete for an over night to All Children's Hospital with Tressa for a sleep study and follow up day study for her excessive short sleep epasoides. Emma is going to Michelle's for her first sleep over and Mandie and Erin are here at the house.

So many cute things have happened to be able to record if I can remember them all..

Tuesday, April 14, 2009