Friday, December 20, 2013

Addy updates

Yesterday Addy went to the cardiologist to follow up on an irregular heartbeat that the GI doc in Kansas City said that he heard. We did an EKG and it was completely normal. Her cardiologist listened to her and didn't hear anything irregular. He did go ahead and put her on a 24 hour monitor just to be sure. She did so well wearing her "purse" lol. She's actually smiling in this pic even though she looks like she's in pain lol.
After we saw cardio we headed over to her surgeon's office. We haven't had to see them in about three years! The surgeon that actually did Addy's analplasty and pull through surgeries moved to Alaska awhile back but his nurse practioner was involved with all of Addy's surgeries is still here. She was so excited to see Addy :) She was amazed at how well she looks and how well she is doing. She was a bit shocked to see Addy's shirt that said "Big Sister to a Little Mister" lol. Addy told her all about "Jordy" :) She did a full exam and we are very thankful that she does not have an issue down there and does NOT need dilations that she did years ago :) She could tell she was pretty full though and ordered an x-ray. We went down to x-ray to take a pic of her belly. I was just there on Monday with Jordan because he needed his head x-rayed. He had severe torticollis and craniosynotosis as an infant and he has and he was there for his one year check. He's doing fine, just took five of us to get the x-ray! The techs were quite pleased that Addy, the perfect patient, just layed very still for her picture :) The film showed that Addy's colon is completely full :( so looks like we are going to be doing a cleanse over break. I'm quite irritated that KC didn't mention this a month ago (yes she compared films, no change). Since Addy was born with IA she has more of a chance to have the backed up issues than the leaky issues she has. The NP thinks this will be a huge help in all of the GI issues she's been having. I'm so hoping that she's right!
We turned in Addy's monitor today and saw her nutritionist. She's having us add some more water to her feedings so that may help things along too :)
This just has to be included because he's cute!

Wednesday, December 11, 2013

Having an eater

You know I had three children that I never thought a whole lot about their ability to eat. We definitely went through some sensory things with Cooper and he continues to be a very picky eater. We did go a couple of years with him throwing up a lot at meals, especially if he ate too fast or got a taste or a bit of texture that he didn't like. It seemed to happened most often at restaurants. That was always fun.

Then we got Addy. Feeding has been a major thing with her. There are times when I just want to give up and face the fact that she isn't going to eat. I am fine with that. It would probably be easier that way since she has such a major reaction to any milk/dairy. She is making progress. She's made very slow progress for years but it is progress :) She will now actually take a bite of food then immediately spit it out. But there was a time when we couldn't even put a spoon on her lips. She has come a long way. Knowing Addy I have a feeling that one day she's just going to eat :)

Well now we have this:

This boy can eat!

Friday, December 6, 2013

Tree Trimming

We had about 9 inches of snow yesterday and today so we were home for a snow day! Since we were all home (except Jarika of course) and Scott was working from home we were finally able to get our Christmas tree up!
(No way to get all sides at once but love that we got to add a name this year to the family ornament!)

This is the first year that Addy got into it :) It was so cute, she always wanted help to put the ornaments on even though she could do it :) I get my kids a Christmas ornament (or two or three lol) every year and Addy LOVED her Rapunzel one I got her this year. I just ordered her some Alvin and the Chipmunks too, she will go crazy over those!

Jordan was napping when we started decorating. That didn't last long and he didn't want to be left out. It's a good thing that the tree is in the basement and he is rarely down there. He REALLY wants to get a hold of every ornament on the tree! We will have to watch him like crazy on Christmas morning since the floor is now stained concrete and the ornaments will shatter. Not that I know that from experience or anything (yep, I'm the only one that dropped and broke an ornament).

Now I need to start wrapping some presents!

Sunday, December 1, 2013


I can't believe how many pictures I did NOT take on Thanksgiving! I needed to get some pictures of all five kids together for Christmas cards and it was an epic fail. Completely forgot. So here are just a few pics of the amazingly wonderful day we had.

We are always welcomed to my brother's in-laws home for Thanksgiving. The kids have so much fun playing together and this past year we just have not the chance to get together as much as we'd like. Too many kids with different schedules :)

Jordan was fascinated with the Christmas tree. I had already decided not to put up the tree upstairs that I decorate with my purple ornaments and Snowbabies. It usually goes in the family room and that is where we always are. Glad I decided to forgo the tree. Jordan would have it destroyed in no time lol. He is walking now and I have a feeling that we would have broken purple ornaments everywhere!

So now it's time to get the decorating finished at our house :) I have some of the upstairs completed and haven't even touched the basement. Hopefully this week. The next two weekends are crazy busy so it's got to be done this week :) I hope everyone had a great Thanksgiving, we sure did :)

Monday, November 25, 2013

Little Man

If you are a friend of mine on Facebook, then this is old news, but, those of you that aren't...

After 17 months of loving and enjoying this precious baby boy. Our son was declared to be ours on Friday :)
I have talked some about this precious boy but since he was a foster child we had to be quite tight lipped. Well, now I'm going to share the story that I never knew I would ever have the chance to share. On May 24, 2012, I received a phone call from a high school friend, Caroline. She explained that she wanted to throw something out at me not having a clue how I would react or say. She explained that she was a social worker placing some children into foster care and the two week old baby had Down syndrome. She said she was sitting in a meeting discussing these children and a voice was telling her to call me. We know who that voice was :) She listened to our Heavenly Father talking to her. He knew that this amazing little boy was meant to be our son. Scott and I had never been foster parents and the thought of it scared the bejeezes out of me. We had obviously adopted before, but Addy was not a foster child, she was a private placement adoption. After Scott and I talked, we decided that we would jump in with both feet and accept this baby into our home. We went in knowing that he was a foster child and the ultimate goal is reunification with birth parents. I went in knowing that I was going to fall madly in love with this baby and God put him with me for a reason and whatever His will was, we would follow.
On June 16, 2012, I traveled to Columbia, MO, to spend the night in the hospital with this adorable little one-month old baby. When I walked into the NICU, a nurse was holding a baby with the most hair I had ever seen. I reached down and touched his head and said "oh my goodness, look at this baby!: the nurse turned around and I then exclaimed "that's my baby!" She said "Oh yeah, are you Cammie? This is your baby!". I remember thinking that he was NOT MY baby. He was another woman's baby, I was just going to be fostering him. However, always with the hope to adopt him :) We had a fantastic night and before I knew it we were heading home :)
He seem to just fit into our family perfectly :) We participating in Family Support Team meetings monthly to meet with his siblings, their foster parents, juvenile officer, guardian ad litem, attorneys, case workers, and parents. The first FST I went to I was a nervous wreck. I was so scared I would do or say something wrong. His birth mother wasn't there that first time but was on the phone. I felt for her. I can't imagine being separated from my children. We had our little man for 8 months before his birth parents had a visit. I thought I was going to throw up when that meeting was scheduled. I texted Caroline and she assured me that everything would be fine (she's adopted through foster care twice). She was right. I was nervous, but things went well. Little Man's birth mom said to me that my baby was so cute. I remember looking at her and thinking, "he's your baby". I smiled and said "thanks". She has many things she was dealing with in her life and she thanked me for taking care of her son and she could tell that we loved him. She was so right, we were in love from day one. She asked if we would adopt him. I told her that if reunification did not work out we would definitely adopt him. She stated that she felt she couldn't care for him and felt it best that we adopt him. That made me so thankful and sad at the same time.

Foster care is such a road of ups and downs. Until Friday I always knew that he was not my son but in my heart he sure was. Even though all along I was pretty certain that we would not be giving him to someone else, there was always that fear. Thankfully, God always knows what He's doing :)

I will share more but this is the gist of his story. He flowed into our lives and is truly a gift from God. So we are so happy to announce that Jordan (to flow) Matthew (gift from God) Heflin is officially our son forevermore! Enjoy some amazing pics from his adoption day :)

Friday, October 4, 2013

31 for 21 Day 4

I missed a post yesterday due to pukey kids :( Poor Addy has the stomach flu for the second time this school year! Fortunately this time I think we have headed it off without infusion. She's handled mixed Pedialyte and Formula this afternoon. She was looking pretty iffy this morning :( I was afraid that her glucose level may be low again so I bit the bullet and added her formula back to her feeds and so far so good. I'm heading to St. Louis tomorrow for a Cleft Palate workshop so I'm praying that no one else has problems tomorrow while Daddy's in charge. 3 out of the 4 kids have been sick this week :(

So I stole this from the Down Syndrome Guild of Kansas City, one of my favorite resources :)

Wednesday, October 2, 2013

31 for 21 Day 2

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   
  • Addy has Trisomy 21. We think Little Man has Trisomy 21, however, due to his development he is going to be re-tested (we've never seen his genetic testing) to see if has translocation.

  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • Addy has had multiple surgeries and hospitalizations in her seven-year life and has had multiple illnesses that have kept her from school. Little Man has been hospitalized once since he was born and has never had surgery.

  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Addy has the upward slant to the eyes, her left hand has the single palmar crease, her right does not. Little Man has the palmar crease on both hands. His eyes also have the upward slant, however, due to his ethnicity it is not as pronounced.

  • Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

  • People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
  • Addy attends First Grade with her typical peers for 68% of her school week. She participates in our church's children program weekly and takes dance class with her typical peers.

  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Addy's IQ falls within the moderate range at this time. However, she has some amazing strengths. She is an excellent reader and is doing very well with her math skills. She follows directions well (when she chooses to) and participates to the best of her ability.

  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

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